DH and I were both clinging to some sense of normalcy, so instead of going through the emergency room, DH dropped me off at the regular hospital entrance while he parked the car in the garage across the street. I trudged inside by myself, gritting my teeth and stopping every few steps to catch my breath. Surrealy, people milling in the halls smiled, assuming I was in regular labor. DH caught up with me while I was getting set up in L&D triage. A few minutes into monitoring they decided we were in trouble, and what had been a very quiet room exploded with activity as half a dozen nurses and doctors descended on my curtain area. An IV was inserted, medical history taken, consent forms signed. They feared rupture or possibly placental abruption and wanted to do a stat c section. Amazingly, despite the grimness of what they suspected, they said DH could be present in the OR. He kissed me hastily as we separated so DH could get dressed in scrubs.
"What did you say your name was again?" I sputtered to the on-call OB as she steered the gurney around several tight corners into the OR. (I'll call her Delivery Doc here.) I at least wanted to know her name, considering what she was about to do.
Delivery Doc reintroduced herself and apologized for the rush while simultaneously continuing to move rapidly around the OR, moving trays and equipment into place. Several nurses were doing the same thing. One of them helped me crouch over my big belly and hold still while anesthesiologist administered the spinal block. Soon the warm, fuzzy numbness spread up and down from the needle in my back. It felt so good to not be in pain anymore!
The anesthesiologist complimented me on being so calm under the circumstances. But I wasn't calm. Everything was happening so quickly I felt stunned and several steps behind the action. They put up a sterile drape and judging by the tugging, I knew the surgery had already begun, and that they were not waiting for DH to arrive. Then I heard Delivery Doc say, "It's a rupture. The baby's feet extrude through the top of the uterus into the abdomen. Membranes are broken."
That's when I lost it. The room spun as I craned my neck in an effort to somehow see what was going on beyond the drape. "What? What is happening??"
The anesthesiologist tried to quiet me down. He stood up from his stool near my head and looked over the drape. "Yes, I can see the baby's feet sticking through the top of the uterus. I'll have to order some blood as a precaution in case you need a transfusion," he said. "But I'm hoping we won't need to use it. The bleeding doesn't look so heavy right now, which is a good sign."
I realized DH was now at my side. "They said my scar ruptured, " I blubbered. "Can you look and tell me what's happening?"
Ever the trooper, poor DH peeked over the drape as requested. But after a few moments he turned back to me. "I have no idea what I'm looking at," he confessed.
Then, voice thick with relief, Delivery Doc announced, "Wabi your baby is kicking and screaming at me as I'm taking her out!" Suddenly there was a thin, high-pitched mew, like the littlest kitten. And a nurse popped around the edge of the drape holding a baby -- my baby!
She was red-faced and crying in perturbed little bleats. She seemed so annoyed and bewildered at being wet and naked in that cold, bright room. I instantly felt she might be all right.
"Just look at her," said DH, astounded.
The nurse took the baby across the room for cleaning and observation. After a few minutes she was deemed healthy and stable enough to be handed off to DH. In her tightly wrapped blanket, she looked tiny to me -- several pounds lighter and almost five inches shorter than Big A was at birth. But then again, Big A came into the world ten days past her due date, not five weeks early. I reminded myself that for her age, she was actually pretty big.
Since I couldn't put my arms around the baby while lying on the table, DH held her cheek to cheek with me. Her eyes were shut and she kept pursing her sweet little lips like she was trying to figure out exactly what had just happened.
"Me too," I thought, "Me too."
Delivery Doc was still working hard on the other side of the drape, trying to stop the bleeding and repair my uterus. Occasionally I'd catch part of the discussion regarding suction, irrigation, or sutures. But in a room full of strangers where I was cut down the middle and naked everywhere else save for a few drapes, I now felt like it was just me, DH, and our baby in the world. I could feel DH's hands pressed up against my shoulder as he helped me cuddle up to our little girl. Our three faces formed an intimate circle. I knew that the hell that had just broken loose would have some long-term physical and emotional costs. But I would take the costs. At that moment all I felt was elation at seeing my little girl for the first time. It was awesome to be alive and amazing to see our baby. It was the world's best day ever, as far as I was concerned.
"Let's name her A____," I said. And DH agreed.
After awhile they took Little A to the nursery for a few more tests and DH tagged along, saying he'd see me later. Things were calmer in the OR now. People began to chat. I stared up into the blue void of the sterile drape and suddenly felt kind of bored. I wondered how long it would be until I could see Little A again. I tuned back into what the nurses and the doctors were saying.
"... walked herself into the hospital with a ruptured uterus," one of them said. Another responded, "Patient must have an extremely high pain tolerance." To which I piped up with, "Oh no, it really hurt a lot." And that made Delivery Doc laugh.
.........................................................................................................................................................................
After everything we'd gone through, DH and I both felt my postpartum stay in the hospital seemed like a vacation. Sure, we were getting up every two hours around the clock for pumping and finger feedings. But in between those feedings, we could really rest for the first time in eons. The worry that stalked us for so long was gone, and in its place was the cutest little baby we'd ever seen, plus chocolate treats and baby gifts from visitors. Really, it was better than a vacation in the sense that you usually don't get handfuls of percocet every six hours on the Love Boat. Little A did have trouble breast feeding and regulating her body temperature at first, as well as some jaundice. But these were completely surmountable problems. Also, it turned out that recuperating from the c section was a lot easier than the last month of the pregnancy had been. (Thanks again, percocet!)
Still, some comments we received in the hospital left DH and I rattled. Doctors and nurses involved in our c section would stop by my room and seem so happy to see how we were doing. "I'm so glad you came in when you did," everyone said. That was nice. But quite a few also added, "Not to freak you out, but people die from what you had." Which is something that can only going to freak you out quite a lot, especially when person after person keeps saying it.
I mentioned what was happening to our beloved family pediatrician when she stopped by to see the baby one day. "This is making me a little paranoid," I admitted.
My kids' pediatrician and I have a very informal report. (For example, her reaction when she found out about my uterine rupture was "Fucking SHIT, dude!") I count on her to give me the straight story. She rolled her eyes.
"What is wrong with people? Obviously you don't need to hear that over and over," She said. "But look, to be honest, what they are saying isn't an exaggeration. I was talking to my husband about your case the other day, too. He's also a pediatrician, and we both were saying that usually the outcome is not nearly so good." She smiled at Little A and me. "But I don't think anyone wants to freak you out. People are just marveling at how lucky you are."
Lucky. Ever since we suspected something was wrong with our Trisomy 18 pregnancy the year before, nothing made me feel remotely lucky. If anything, I felt like probability's bitch, so rare and strange were the problems that kept arising as we tried to have another baby. If someone would have told me that just one week shy of my D&E anniversary (51 weeks to the day) I would again come so close to losing what is surely my last baby, in addition to nearly dying myself ... Well, I might have believed them, such was the funk I was in. But I would not have believed that both the baby and I would end up ok despite all that. Never.
This is but one of the many gifts my little daughter came bearing. The gift of lightness, the gift of hope. The gift of being lucky once again. Because I truly do feel lucky and so incredibly grateful. I really needed some sweet to go with my bitter, and now I've got it.
Showing posts with label backstory. Show all posts
Showing posts with label backstory. Show all posts
Friday, August 31, 2007
Tuesday, August 28, 2007
Backstory 6: Scars, Denial, and Instinct
People are supposed to honor instinct, to listen to their little voices. But the problem with instinct is that in bad times it can come off as chicken little, wings flapping and eyes bulging as it shrieks again and again of danger. In contrast, denial can seem so polite, quiet and reasonable. During crazy times, it is easy to decide that denial is your very best friend, while instincts are just plain annoying. That's what I did in Little A's pregnancy. I mixed up which voice was the right one to listen to.
For several weeks, I lived with my scar hurting in secret and waited for it to go away. When it stubbornly stayed there, I eventually blurted out the news to my OB. My doctor felt the spot. Most likely nothing, she said. But she'd consult with the perinatologist and see what he thought. Maybe we ought to have me go in for a scan or something later in the week.
I left the office kicking myself and wondering why I had to be such a drama queen. Yet while I was thinking elaborate thoughts about how I'd just blown things out of proportion, I found myself driving straight from the doctor to a toy store rather than going directly to work. Big A's birthday was a week away and suddenly it felt urgently important to get her a present right then. The doctor called me on my cell phone as I left the store. The perinatologist she consulted with wanted me to go straight back to the hospital for monitoring.
So in week 29 of the pregnancy I entered the schizoid existence that many women who struggle with infertility know too well. It was the everything is wonderful right now (but could go to shit any second!) stage. The good news: ultrasound scans and biophysical profiles showed the baby was healthy. The bad news: nobody knew if things would stay fine. Ultrasound could show if my scar was still intact or had catastrophically failed. But ultrasound couldn't tell me if the currently intact scar was holding together well or about to shred. The thing that could do that was a CT scan. Except CT scans are many Xrays layered together. Since Xraying a gravid uterus was a no no, we were flying blind. Several perinatologists debated whether an MRI might be the best course, but eventually that idea was dropped. There were no studies to fall back on regarding treatment, so everyone was making it up as they went along.
We settled into watchful waiting, a weekly regimen of extra doctor appointments, nonstress tests, and scans. DH and I told our friends about our dilemma in a very "oh, this is one of those annoying worries that will turn out to be nothing" sort of way. At first I was very worried -- my gut told me this was serious. But after the first couple weeks of living with the pain and the uncertainty , I began to ignore my freaked out feelings. It's not as though I wanted to fret. I was so busy trying to cajole contractors into finishing a kitchen renovation that had dragged on for months. I needed to finish up piles of work before I went on maternity leave in January. And God, here was Christmas looming. By the time bouts of preterm labor started in November, the whole scar issue had slid onto the back burner.
From this point on, the pregnancy really went in the crapper. I had a few bouts of strong contractions that sent me into the hospital for medication and monitoring until they could be quieted down. I was diagnosed with a sudden onset of polyhydraminos, too. They thought that the extra amniotic fluid from that probably made my uterus irritable and kept triggering contractions. As for why I suddenly had so much fluid -- well, nobody was willing to guess about that. After each episode of strong contractions, I would spend the next day on the couch, so sore and worn out I could barely move.
If I were at 36 or 37 weeks, they would likely have done a c section to get the baby out and stop the downward spiral. But in weeks 32 and 33, the best course of action for the mother and baby is not so clear cut. The baby seemed altogether happy in there, and while I was supremely ill, it didn't seem to be life threatening -- no infections or blood loss as far as we could tell. So we opted to try to leave the baby in and avoid a NICU stay if we could. I started on anti-contraction medications at home, quit work, and tried to stay off my feet. I just wanted to get past week 34, at which point most babies have mature lungs.
In retrospect I can pick out the thread of what happened each step of the way when my uterus finally gave out. The sharp jolt that woke me up one morning in the 35th week was the baby kicking through the overstretched perforation scar. I know the contractions started up right after that because my uterus was rightfully miffed about Little A poking through alien style. And that stabbing pain I felt after the contractions? It was a symptom of internal bleeding, as fluids were pooling where they ought not be. It all makes sense. It seems ludicrous that I didn't immediately call 911 and go the the hospital in an ambulance.
But when I was living through it none of these issues clearly came together in my head as related. DH and I had been side tracked by the other contraction episodes, which no one thought were related to the scar issue. I thought this was more of the same thing. And although the contractions after the rupture were much, much worse than any others I'd felt -- even full-blown labor with Big A had not felt so bad -- the preterm labor episodes with Little A had been getting progressively more painful each time I had them, so it's not like what I felt that last time didn't fit the overall pattern. Also, I saw no blood or fluid to clue me in that there was a big problem. All of that was emptying into my belly rather than draining out my cervix.
All this is my way of explaining that rather than go straight to the hospital, I stuck around my house. I popped an anti contraction pill and tried to wait it out. For several hours, I sweated, winced and shook through the pain. DH kept asking if we should go to the hospital, but I was in the crazy zone. I didn't want to go through the trouble of getting to triage only to be sent home again like I had been the other times. I wanted to wait it out.
Eventually contractions started to come back despite the medication I took. It was only then I realized this wasn't the same as before. Plus, I couldn't tell what the baby was doing anymore. She might have stopped moving entirely, or could have been tap dancing, for all I knew. There was too much agony to comprehend what was happening anymore.
I finally said I thought I needed to go to the hospital. The first people we called to take care of Big A were out enjoying their Saturday. They asked if we could wait another hour before going into the hospital so they could return from their day trip and pick up Big A. DH asked me the question, and I stared at him, unable to think, unable to decide. "No," he finally said. "We need to go now." He dropped off Big A with our neighbors and within minutes we were speeding toward the hospital.
For several weeks, I lived with my scar hurting in secret and waited for it to go away. When it stubbornly stayed there, I eventually blurted out the news to my OB. My doctor felt the spot. Most likely nothing, she said. But she'd consult with the perinatologist and see what he thought. Maybe we ought to have me go in for a scan or something later in the week.
I left the office kicking myself and wondering why I had to be such a drama queen. Yet while I was thinking elaborate thoughts about how I'd just blown things out of proportion, I found myself driving straight from the doctor to a toy store rather than going directly to work. Big A's birthday was a week away and suddenly it felt urgently important to get her a present right then. The doctor called me on my cell phone as I left the store. The perinatologist she consulted with wanted me to go straight back to the hospital for monitoring.
So in week 29 of the pregnancy I entered the schizoid existence that many women who struggle with infertility know too well. It was the everything is wonderful right now (but could go to shit any second!) stage. The good news: ultrasound scans and biophysical profiles showed the baby was healthy. The bad news: nobody knew if things would stay fine. Ultrasound could show if my scar was still intact or had catastrophically failed. But ultrasound couldn't tell me if the currently intact scar was holding together well or about to shred. The thing that could do that was a CT scan. Except CT scans are many Xrays layered together. Since Xraying a gravid uterus was a no no, we were flying blind. Several perinatologists debated whether an MRI might be the best course, but eventually that idea was dropped. There were no studies to fall back on regarding treatment, so everyone was making it up as they went along.
We settled into watchful waiting, a weekly regimen of extra doctor appointments, nonstress tests, and scans. DH and I told our friends about our dilemma in a very "oh, this is one of those annoying worries that will turn out to be nothing" sort of way. At first I was very worried -- my gut told me this was serious. But after the first couple weeks of living with the pain and the uncertainty , I began to ignore my freaked out feelings. It's not as though I wanted to fret. I was so busy trying to cajole contractors into finishing a kitchen renovation that had dragged on for months. I needed to finish up piles of work before I went on maternity leave in January. And God, here was Christmas looming. By the time bouts of preterm labor started in November, the whole scar issue had slid onto the back burner.
From this point on, the pregnancy really went in the crapper. I had a few bouts of strong contractions that sent me into the hospital for medication and monitoring until they could be quieted down. I was diagnosed with a sudden onset of polyhydraminos, too. They thought that the extra amniotic fluid from that probably made my uterus irritable and kept triggering contractions. As for why I suddenly had so much fluid -- well, nobody was willing to guess about that. After each episode of strong contractions, I would spend the next day on the couch, so sore and worn out I could barely move.
If I were at 36 or 37 weeks, they would likely have done a c section to get the baby out and stop the downward spiral. But in weeks 32 and 33, the best course of action for the mother and baby is not so clear cut. The baby seemed altogether happy in there, and while I was supremely ill, it didn't seem to be life threatening -- no infections or blood loss as far as we could tell. So we opted to try to leave the baby in and avoid a NICU stay if we could. I started on anti-contraction medications at home, quit work, and tried to stay off my feet. I just wanted to get past week 34, at which point most babies have mature lungs.
In retrospect I can pick out the thread of what happened each step of the way when my uterus finally gave out. The sharp jolt that woke me up one morning in the 35th week was the baby kicking through the overstretched perforation scar. I know the contractions started up right after that because my uterus was rightfully miffed about Little A poking through alien style. And that stabbing pain I felt after the contractions? It was a symptom of internal bleeding, as fluids were pooling where they ought not be. It all makes sense. It seems ludicrous that I didn't immediately call 911 and go the the hospital in an ambulance.
But when I was living through it none of these issues clearly came together in my head as related. DH and I had been side tracked by the other contraction episodes, which no one thought were related to the scar issue. I thought this was more of the same thing. And although the contractions after the rupture were much, much worse than any others I'd felt -- even full-blown labor with Big A had not felt so bad -- the preterm labor episodes with Little A had been getting progressively more painful each time I had them, so it's not like what I felt that last time didn't fit the overall pattern. Also, I saw no blood or fluid to clue me in that there was a big problem. All of that was emptying into my belly rather than draining out my cervix.
All this is my way of explaining that rather than go straight to the hospital, I stuck around my house. I popped an anti contraction pill and tried to wait it out. For several hours, I sweated, winced and shook through the pain. DH kept asking if we should go to the hospital, but I was in the crazy zone. I didn't want to go through the trouble of getting to triage only to be sent home again like I had been the other times. I wanted to wait it out.
Eventually contractions started to come back despite the medication I took. It was only then I realized this wasn't the same as before. Plus, I couldn't tell what the baby was doing anymore. She might have stopped moving entirely, or could have been tap dancing, for all I knew. There was too much agony to comprehend what was happening anymore.
I finally said I thought I needed to go to the hospital. The first people we called to take care of Big A were out enjoying their Saturday. They asked if we could wait another hour before going into the hospital so they could return from their day trip and pick up Big A. DH asked me the question, and I stared at him, unable to think, unable to decide. "No," he finally said. "We need to go now." He dropped off Big A with our neighbors and within minutes we were speeding toward the hospital.
Backstory 5: Tunnel of Pregnancy
I snapped this photo of Big A not long ago. She's running through a pedestrian tunnel at a bike path entrance screaming, "ECHO ... ECHO ... ECHO ... NO MORE PICTURES, MOMMY!" I was laughing when I took it. But later when it downloaded to the computer and I saw it on a bigger screen, I felt uneasy. The photo reminded me of ... something. Some other time. It was later on that I realized it brought me back to being pregnant with Little A last year.
Lots of people feel poorly in routine pregnancies. Hell, I felt shitty during Big A's ever-so-normal gestation due to nausea in the first 20 weeks and killer heartburn and leg swelling in the second 21. While not pleasant, it paled in comparison to what I experienced while carrying Little A. With her there was bronchitis that hung on for several months in the first and second trimesters. I would hack, hack, hack, and that would trigger my gag reflux so I would puke, puke, puke. And I discovered that even if you kegel like nobody's business, once you push a baby out then your pelvic floor, she ain't what she used to be. Subsequent pregnancy + violent coughing - virginal nether regions = pee on the floor (and serious mortification).
But, it was more than just a bad cough and peeing accidents. I felt so incredibly exhausted and ill even after the bronchitis finally cleared and everything was supposedly going well in the second trimester. I could hardly get dressed and take Big A to the babysitter most mornings without feeling like I needed a 48-hour nap by the time I got to work. Nights were even worse -- wrestling Big A into the car seat would expend the remainder of my daily energy reserves. I couldn't carry her upstairs from the garage when we got home, which upset Big A's toddler sensibilities greatly. She'd scream and fuss while I fought the urge to pass out as I nuked her something prepackaged for dinner. And then I would have to lie down. No choice about it, just had to. I would turn on the TV to occupy my little girl and pray for DH to come home as soon as possible. I knew I was being a terrible parent. Like in the picture, Big A was a blur of energy, of wants and needs, and she was pulling away from me so fast. I could not catch up.
I was failing her, and it pained me to see the failure so clearly yet not be able to change it.
Plus, there was another pain. It began near the end of the second trimester without any particular event having caused it. Once it began, it never went away. Still, it was not a terrible sensation. Just an ache. If there had been round ligaments or ribs near the location to blame for it, it wouldn't have even rated a blip on my pregnancy crap-o-meter. But there was only one thing the site of the pain corresponded to, and the hair stood up on the back of my neck whenever I thought about it.
It was my scar. The place where the surgeon had accidentally punctured my uterus during my botched termination surgery. Something was happening to my scar.
(Continued soon ....)
Friday, June 1, 2007
Backstory # 4. Complications are Complicated (AKA "Why I Didn't Sue Anyone ...)
It is an (American) legal corollary of Godwin's Law: the bigger the medical complication, the greater the chance that at least one doctor will be sued. It doesn't really matter if it was true malpractice or not. It only matters if something went wrong. Therefore it's no surprise that I have been asked by numerous people if I was going to sue the OB who perforated my uterus during my D&E surgery or the anesthesiologist for my D&E and emergency laparoscopy.
When people learn I didn't sue anyone, they either express shock at my naivete, or conclude I must have found Jesus. Never mind that I'm the same old agnostic cranky pants I always have been outside of this subject. Cut me off in traffic and I want to cut you off right back, and my kids in the backseat probably just learned a new swear word, too. As for being too trusting or naive ... I'm an editor, for chrissakes. We aren't exactly known for our rosy world view.
The truth is, I thought about suing after my D&E went wrong. I think it was reasonable to do so. Usually a pregnancy termination for medical reasons is the last sad chapter in a particular sort of heart-breaking story. A dilation and evacuation (D&E) doesn't typically effect future fertility at all. While the emotional recovery takes a long, long time, from a physical standpoint, the procedure has a quick recovery time.
But with me the D&E was not the end, but the kickoff to any even more difficult set of experiences. Before the uterine perforation, I had sailed through a vaginal delivery for Big A. But the perforation placed me in the high risk, c-section-only category for future pregnancies. Then, during the laparoscopy done to repair the perf, the general anesthesia failed. I heard conversations going on about me in the OR, struggled with the pain of incisions being cut and instruments being placed, and felt like I was suffocating from the intubation tube. And since I was paralyzed from the anesthesia, I was unable to let anyone know what was happening. (See my "Backstory 3" post for more details on all that.)
Finally, while I was told that another pregnancy was likely safe so long as I waited 3-4 months to conceive, avoided labor, and had a planned c section, this turned out to be incorrect. Little A shoved her feet through my perf scar during the 35th week of pregnancy. It happened at home, before onset of labor -- an extremely perilous situation. In addition to nearly killing Little A and me, the uterine rupture also effectively ended my ability to have more children.
So ... My point is that the doctor's slip of a hand with a surgical instrument during my D&E had terrible implications for me and my family. In light of that, thinking about the possibility of suing somebody in the first raw days after my injury was just spectacular. It really, really helped me cope. I highly recommend it to anyone in a similar situation.
Any medical professionals reading this are now recoiling in horror. But, I'll say it again -- I did not sue. I'm not advocating that patients always sue. I'm just saying that the energy burst that comes with the desire to sue is good. It can wrench you free from the haze of hurt and shock and compel you to have real conversations with your doctor.Unfortunately, the type of conversations patients crave when they have bad complications scare the bejesus out of most medical professionals. But I think talking openly after an accident actually benefits the doctor as much as it does the patient. Most of the time, the patient discovers that the people working on them struggled with incomplete information. They learn that the procedure was tricky, and that what occurred was a rare but honest mistake. In those circumstances, I think the majority of people eventually come to the conclusion that they had crappy luck, but ok medical care. This is a scenario most people can ultimately forgive.
By contrast, the thing that fills you with vindictive resolve is the sense that someone is more concerned with covering their ass than helping you. If people had refused to talk (or talked down) to me after the perforation, things might have gone differently in the lawsuit department. Here's the thing health professionals need to realize: patients will assume the way you are treated after a bad complication exactly mirrors the way you were treated during the procedure that had a poor outcome. So a lot of honesty is in order. And a little bit of sympathy and niceness goes a long way, too.
The doctors who were involved in my D&E did not all behave perfectly afterwards. But, they behaved quite well. I never caught anyone in an obvious lie. Most of the time, I felt my questions were not ducked. For instance, Dr. Surgeon told me "I perforated you" rather than "Your uterus was really thin because of pregnancy, and it tore easily." Both statements are true, but the first one showed that Dr. Surgeon was not trying to deny her part in the damage. She also said, "Ultimately when something like this occurs, it is operator error." That's probably the polar opposite of what lawyers would advise a doctor to state, but let me tell you, that sentence alone really made me want to give Dr. Surgeon the benefit of the doubt.
Still, Dr. Surgeon didn't help me track down my anesthesiologist (whose name I initially couldn't recall) after I told her that I woke up during the procedure. In fact, her demeanor changed markedly when I described what I remembered occurring. She froze up, and I could almost see the thought balloon over her head that read "Oh shit, she's crazy! She's gonna sue everybody!" Dr. Surgeon told me she couldn't remember my anesthesiologist's name, which struck me as implausible, given that my perforation was a rare occurrence (first perf in ten years of the surgery, she said) and therefore likely a memorable experience. I'm sure she could have at least looked that detail up, but she never offered to do so.
Worse, Dr. Surgeon never apologized. To this day that stings. Saying she was sorry wasn't required for me not to sue. But, it would have been the decent thing to do. She caused a lot of damage. On purpose or not, it was permanent damage.
The anesthesiologist did better. I wrote him a letter describing what I'd experienced. I told him I needed to know what happened because I now had a full-blown anesthesia phobia and this was a wee bit problematic, given that I wanted to get pregnant again and was staring down a mandatory c section.
Dr. Anesthesia called me two days after I mailed him the letter. The first words out of his mouth were, "I remember your case well, and I'm so sorry. We all just wanted to help you, but it sounds like we made things worse!"He said he recalled my blood pressure was quite unstable shortly after the D&E converted to an emergency laparoscopy after the perforation. He said he had to change types of anesthesia at the onset of the lap, and then he had to immediately lighten the drugs to stabilize my BP. Dr. Anesthesia guessed that was when I was likely awake. He was ordering my chart to refresh his memory, and would call me back to talk things over again when it arrived. He said he'd try his best to help me piece together the chain of events and also give me pointers on how to relate my medical history to other anesthesiologists, so something like this wouldn't occur in future surgeries. And before he hung up, he said he was sorry once again.
The night the anesthesiologist called me was the first time in the month since the D&E when I didn't suffer from insomnia or anxiety attacks. I don't think this is a coincidence. Finally somebody who was in the room with me when everything went to crap was expressing sadness and sympathy about what happened. Even better, Dr. Anesthesia didn't try to minimize my trauma. He got that I was suffering, and unlike Dr. Surgeon, nothing in his statements or demeanor made me feel that he thought I was crazy or a wimp for feeling the way I did. He sounded like he was suffering at the thought of it all, too.
And that is how I started to move away from the idea of suing anyone. It was incremental. I got more and more information, and none of it indicated carelessness or negligence. I could slowly step away from the need to blame someone for what happened. Little by little, I accepted the notion that sometimes accidents happen. It is the most terrifying of ideas -- the concept that full control of any situation is more myth than reality. But in this case, I do think I was mostly just ... unlucky.
Complications like mine are complicated to live with. Time passing and having a healthy baby now, despite the terror and difficulties that came with that, certainly help me feel a bit better when I look back on what happened last year. But, the truth is I will never really be completely over what happened. I was permanently changed, both physically and emotionally by what occurred. It cannot be erased.
Sometimes I wonder if the doctors involved in my case ever think of me. If they do, I hope they realize that as much as it is possible for me to do so, I have forgiven them. I really do wish them well.
I also pray they are never so unlucky again with a patient as they were with me.
When people learn I didn't sue anyone, they either express shock at my naivete, or conclude I must have found Jesus. Never mind that I'm the same old agnostic cranky pants I always have been outside of this subject. Cut me off in traffic and I want to cut you off right back, and my kids in the backseat probably just learned a new swear word, too. As for being too trusting or naive ... I'm an editor, for chrissakes. We aren't exactly known for our rosy world view.
The truth is, I thought about suing after my D&E went wrong. I think it was reasonable to do so. Usually a pregnancy termination for medical reasons is the last sad chapter in a particular sort of heart-breaking story. A dilation and evacuation (D&E) doesn't typically effect future fertility at all. While the emotional recovery takes a long, long time, from a physical standpoint, the procedure has a quick recovery time.
But with me the D&E was not the end, but the kickoff to any even more difficult set of experiences. Before the uterine perforation, I had sailed through a vaginal delivery for Big A. But the perforation placed me in the high risk, c-section-only category for future pregnancies. Then, during the laparoscopy done to repair the perf, the general anesthesia failed. I heard conversations going on about me in the OR, struggled with the pain of incisions being cut and instruments being placed, and felt like I was suffocating from the intubation tube. And since I was paralyzed from the anesthesia, I was unable to let anyone know what was happening. (See my "Backstory 3" post for more details on all that.)
Finally, while I was told that another pregnancy was likely safe so long as I waited 3-4 months to conceive, avoided labor, and had a planned c section, this turned out to be incorrect. Little A shoved her feet through my perf scar during the 35th week of pregnancy. It happened at home, before onset of labor -- an extremely perilous situation. In addition to nearly killing Little A and me, the uterine rupture also effectively ended my ability to have more children.
So ... My point is that the doctor's slip of a hand with a surgical instrument during my D&E had terrible implications for me and my family. In light of that, thinking about the possibility of suing somebody in the first raw days after my injury was just spectacular. It really, really helped me cope. I highly recommend it to anyone in a similar situation.
Any medical professionals reading this are now recoiling in horror. But, I'll say it again -- I did not sue. I'm not advocating that patients always sue. I'm just saying that the energy burst that comes with the desire to sue is good. It can wrench you free from the haze of hurt and shock and compel you to have real conversations with your doctor.Unfortunately, the type of conversations patients crave when they have bad complications scare the bejesus out of most medical professionals. But I think talking openly after an accident actually benefits the doctor as much as it does the patient. Most of the time, the patient discovers that the people working on them struggled with incomplete information. They learn that the procedure was tricky, and that what occurred was a rare but honest mistake. In those circumstances, I think the majority of people eventually come to the conclusion that they had crappy luck, but ok medical care. This is a scenario most people can ultimately forgive.
By contrast, the thing that fills you with vindictive resolve is the sense that someone is more concerned with covering their ass than helping you. If people had refused to talk (or talked down) to me after the perforation, things might have gone differently in the lawsuit department. Here's the thing health professionals need to realize: patients will assume the way you are treated after a bad complication exactly mirrors the way you were treated during the procedure that had a poor outcome. So a lot of honesty is in order. And a little bit of sympathy and niceness goes a long way, too.
The doctors who were involved in my D&E did not all behave perfectly afterwards. But, they behaved quite well. I never caught anyone in an obvious lie. Most of the time, I felt my questions were not ducked. For instance, Dr. Surgeon told me "I perforated you" rather than "Your uterus was really thin because of pregnancy, and it tore easily." Both statements are true, but the first one showed that Dr. Surgeon was not trying to deny her part in the damage. She also said, "Ultimately when something like this occurs, it is operator error." That's probably the polar opposite of what lawyers would advise a doctor to state, but let me tell you, that sentence alone really made me want to give Dr. Surgeon the benefit of the doubt.
Still, Dr. Surgeon didn't help me track down my anesthesiologist (whose name I initially couldn't recall) after I told her that I woke up during the procedure. In fact, her demeanor changed markedly when I described what I remembered occurring. She froze up, and I could almost see the thought balloon over her head that read "Oh shit, she's crazy! She's gonna sue everybody!" Dr. Surgeon told me she couldn't remember my anesthesiologist's name, which struck me as implausible, given that my perforation was a rare occurrence (first perf in ten years of the surgery, she said) and therefore likely a memorable experience. I'm sure she could have at least looked that detail up, but she never offered to do so.
Worse, Dr. Surgeon never apologized. To this day that stings. Saying she was sorry wasn't required for me not to sue. But, it would have been the decent thing to do. She caused a lot of damage. On purpose or not, it was permanent damage.
The anesthesiologist did better. I wrote him a letter describing what I'd experienced. I told him I needed to know what happened because I now had a full-blown anesthesia phobia and this was a wee bit problematic, given that I wanted to get pregnant again and was staring down a mandatory c section.
Dr. Anesthesia called me two days after I mailed him the letter. The first words out of his mouth were, "I remember your case well, and I'm so sorry. We all just wanted to help you, but it sounds like we made things worse!"He said he recalled my blood pressure was quite unstable shortly after the D&E converted to an emergency laparoscopy after the perforation. He said he had to change types of anesthesia at the onset of the lap, and then he had to immediately lighten the drugs to stabilize my BP. Dr. Anesthesia guessed that was when I was likely awake. He was ordering my chart to refresh his memory, and would call me back to talk things over again when it arrived. He said he'd try his best to help me piece together the chain of events and also give me pointers on how to relate my medical history to other anesthesiologists, so something like this wouldn't occur in future surgeries. And before he hung up, he said he was sorry once again.
The night the anesthesiologist called me was the first time in the month since the D&E when I didn't suffer from insomnia or anxiety attacks. I don't think this is a coincidence. Finally somebody who was in the room with me when everything went to crap was expressing sadness and sympathy about what happened. Even better, Dr. Anesthesia didn't try to minimize my trauma. He got that I was suffering, and unlike Dr. Surgeon, nothing in his statements or demeanor made me feel that he thought I was crazy or a wimp for feeling the way I did. He sounded like he was suffering at the thought of it all, too.
And that is how I started to move away from the idea of suing anyone. It was incremental. I got more and more information, and none of it indicated carelessness or negligence. I could slowly step away from the need to blame someone for what happened. Little by little, I accepted the notion that sometimes accidents happen. It is the most terrifying of ideas -- the concept that full control of any situation is more myth than reality. But in this case, I do think I was mostly just ... unlucky.
Complications like mine are complicated to live with. Time passing and having a healthy baby now, despite the terror and difficulties that came with that, certainly help me feel a bit better when I look back on what happened last year. But, the truth is I will never really be completely over what happened. I was permanently changed, both physically and emotionally by what occurred. It cannot be erased.
Sometimes I wonder if the doctors involved in my case ever think of me. If they do, I hope they realize that as much as it is possible for me to do so, I have forgiven them. I really do wish them well.
I also pray they are never so unlucky again with a patient as they were with me.
Tuesday, April 10, 2007
Backstory 3: Complications
Endless water, mostly calm. No horizon and no bottom sighted. I was just swimming the crawl. Stroke, stroke, stroke, breathe. Stroke, stroke, stroke, breathe. Stroke, stroke, ...
When the time came for the next breath, I skipped it. Just a little mistake, but no need to break my stroke pattern. I could continue and take a bigger breath when the next time came. Stroke, stroke, stroke ...
But wait, I'd missed breathing again. Now I really needed to gasp. Time turn my head out of the water.
But I couldn't turn. And the burning need for air consumed me.
Now I remembered the D&E. I was not swimming, I was having surgery. Something was wrong. Around me I heard the hums and mechanical sounds of the OR. Someone, a woman -- maybe Dr. Surgeon -- was talking to another woman.
"Does it say trisomy 21 in there?" She said. "That's wrong. You need to correct it. It's trisomy 18. Completely different animal."
I felt a searing pain in my belly button. The sensation of not being able to breathe got worse, and I tried breathe, scream, kick. Nothing happened. The pain increased. It felt like someone was shoving a pipe through my navel. Oh God, were they cutting me? Why couldn't I breathe? I needed to breathe! I flashed to a thought of my husband upstairs in the hospital waiting room, completely unaware that something was wrong. And then a line was crossed. I knew I had gone too long without breathing. I was dying. Colors bled away to black.
After ... a moment? An hour? The world suddenly blinked back on. Unfortunately, the struggle to breathe and the pain picked up where they left off, too. But this time as I struggled I realized that I was moaning. I could make noise! Finally, I managed to get my mouth to form a sentence, "Can't breathe!" I rasped.
Someone was there. A nurse. I couldn't open my eyes, but she murmured that I was ok. I felt her adjust the mask on my face and the hiss of oxygen being turned up high. I started to calm down. I wasn't dead. They wheeled me out of the operating room into recovery. My abdomen ached. Not the cramping I had expected, but the jangly pangs that come after being cut. I didn't feel coherent enough to ask what happened yet. Also, I didn't really want to know.
It was the Friday before Christmas weekend in the hospital, and not many surgeries were scheduled that day. There was only one other person in the recovery room. My nurse asked me what my pain level was and injected some medication into my IV. She seemed busy, despite the fact the room was mostly empty, she was a constant whirl of brisk motion around the bed and equipment. But she was calm and had a soothing voice, and that was a blessing. She told me what time it was when I asked, said that I was in acute care recovery because I'd had a complication and needed emergency laparoscopy in addition to the D&E. She said my doctor would come and tell me about it soon.
Another woman came in the room to see me. She said, "You probably don't remember me, but I was your nurse during surgery." And then she made what I guess she thought was a joke, but it stung me: "I know you said it felt like you couldn't breathe. But we knew you could, because you you said you couldn't." I realized that made sense -- if you can talk, you can breathe. But, I felt embarrassed for feeling such panic in the OR. I knew I wouldn't be telling anyone else about what I'd experienced while I was still in the hospital.
While I still felt like I was falling backwards into a pool of black every time I closed my eyes, by the time the doctor arrived, I could at least focus my eyes clearly when they were open. I studied Dr. Surgeon's face as she crossed the recovery room in her blue scrubs. She looked serious. This couldn't be good.
"I perforated your uterus in the D&E," she said. "I performed laparoscopy to repair it. That's why you have an incision under your navel as well as two incisions on your belly."
Ah.
"I know we talked about you trying to conceive quickly after this, but the perforation changes things," Dr. Surgeon continued. "It's in a poor location -- up high, where your uterus is the thinnest and weakest during pregnancy. So, I think that you should wait three or four months before trying again to ensure that it heals well.
She paused. "Also, due to the site of the perforation, I'm not sure that it's advisable for you to have another vaginal birth in the future. Cesareans are probably the safest bet. But, we can talk more about that later." She said she'd call in a prescription for pain meds for me and asked if I had any questions.
It wasn't so much a question as a plea. "Can I go home now?" I desperately wanted to get out of there.
"People who have laparoscopy usually do it outpatient. So yes, if everything goes all right in recovery, then you can go home today."
After Dr. Surgeon left, my recovery room nurse came back. She quietly explained that because acute care recovery is a sterile area, visitors are not normally allowed. But it was so quiet that day ... and, I suspect, she felt sorry for me after hearing what had occurred. Would I want to see my husband if she could find him and bring him back to see me?
I couldn't speak. Tears were closing off my throat, so I just nodded vigorously. I could have kissed her. Seeing DH was better than morphine.
When the time came for the next breath, I skipped it. Just a little mistake, but no need to break my stroke pattern. I could continue and take a bigger breath when the next time came. Stroke, stroke, stroke ...
But wait, I'd missed breathing again. Now I really needed to gasp. Time turn my head out of the water.
But I couldn't turn. And the burning need for air consumed me.
Now I remembered the D&E. I was not swimming, I was having surgery. Something was wrong. Around me I heard the hums and mechanical sounds of the OR. Someone, a woman -- maybe Dr. Surgeon -- was talking to another woman.
"Does it say trisomy 21 in there?" She said. "That's wrong. You need to correct it. It's trisomy 18. Completely different animal."
I felt a searing pain in my belly button. The sensation of not being able to breathe got worse, and I tried breathe, scream, kick. Nothing happened. The pain increased. It felt like someone was shoving a pipe through my navel. Oh God, were they cutting me? Why couldn't I breathe? I needed to breathe! I flashed to a thought of my husband upstairs in the hospital waiting room, completely unaware that something was wrong. And then a line was crossed. I knew I had gone too long without breathing. I was dying. Colors bled away to black.
After ... a moment? An hour? The world suddenly blinked back on. Unfortunately, the struggle to breathe and the pain picked up where they left off, too. But this time as I struggled I realized that I was moaning. I could make noise! Finally, I managed to get my mouth to form a sentence, "Can't breathe!" I rasped.
Someone was there. A nurse. I couldn't open my eyes, but she murmured that I was ok. I felt her adjust the mask on my face and the hiss of oxygen being turned up high. I started to calm down. I wasn't dead. They wheeled me out of the operating room into recovery. My abdomen ached. Not the cramping I had expected, but the jangly pangs that come after being cut. I didn't feel coherent enough to ask what happened yet. Also, I didn't really want to know.
It was the Friday before Christmas weekend in the hospital, and not many surgeries were scheduled that day. There was only one other person in the recovery room. My nurse asked me what my pain level was and injected some medication into my IV. She seemed busy, despite the fact the room was mostly empty, she was a constant whirl of brisk motion around the bed and equipment. But she was calm and had a soothing voice, and that was a blessing. She told me what time it was when I asked, said that I was in acute care recovery because I'd had a complication and needed emergency laparoscopy in addition to the D&E. She said my doctor would come and tell me about it soon.
Another woman came in the room to see me. She said, "You probably don't remember me, but I was your nurse during surgery." And then she made what I guess she thought was a joke, but it stung me: "I know you said it felt like you couldn't breathe. But we knew you could, because you you said you couldn't." I realized that made sense -- if you can talk, you can breathe. But, I felt embarrassed for feeling such panic in the OR. I knew I wouldn't be telling anyone else about what I'd experienced while I was still in the hospital.
While I still felt like I was falling backwards into a pool of black every time I closed my eyes, by the time the doctor arrived, I could at least focus my eyes clearly when they were open. I studied Dr. Surgeon's face as she crossed the recovery room in her blue scrubs. She looked serious. This couldn't be good.
"I perforated your uterus in the D&E," she said. "I performed laparoscopy to repair it. That's why you have an incision under your navel as well as two incisions on your belly."
Ah.
"I know we talked about you trying to conceive quickly after this, but the perforation changes things," Dr. Surgeon continued. "It's in a poor location -- up high, where your uterus is the thinnest and weakest during pregnancy. So, I think that you should wait three or four months before trying again to ensure that it heals well.
She paused. "Also, due to the site of the perforation, I'm not sure that it's advisable for you to have another vaginal birth in the future. Cesareans are probably the safest bet. But, we can talk more about that later." She said she'd call in a prescription for pain meds for me and asked if I had any questions.
It wasn't so much a question as a plea. "Can I go home now?" I desperately wanted to get out of there.
"People who have laparoscopy usually do it outpatient. So yes, if everything goes all right in recovery, then you can go home today."
After Dr. Surgeon left, my recovery room nurse came back. She quietly explained that because acute care recovery is a sterile area, visitors are not normally allowed. But it was so quiet that day ... and, I suspect, she felt sorry for me after hearing what had occurred. Would I want to see my husband if she could find him and bring him back to see me?
I couldn't speak. Tears were closing off my throat, so I just nodded vigorously. I could have kissed her. Seeing DH was better than morphine.
Tuesday, April 3, 2007
Backstory 2: Diagnosis of Trisomy 18 and Prepping for the D&E
With all the brash, ugly drama that surrounds abortion in general, let alone second trimester abortion, you would think that there would be a great deal of discussion and debate amongst medical professionals and pregnant women about what should be done when a poor prenatal diagnosis is made. I can't speak for others, but for me, I found that when I was in a real abortion situation vs. a theoretical debate, the world got very , very quiet. DH and I spent the three weeks between our positive screening test and the amnio results researching Trisomy 18. We read everything from textbook descriptions of the disorder to memorial websites for T18 babies authored by prolife parents who urged others to carry their sick babies to term. But no medical personnel involved in my and the baby's care ever offered any opinion on what we should do. Nobody even offered us any sort of way to frame such a decision. So we muddled through on gut instinct.
Our decision was ultimately based on three factors: 1) What would the baby's quality of life be if we carried her to term? 2) What would our whole family's quality of life be like if we carried to term? 3) What scenario was the safest thing for me, healthwise?
In a way, DH and I were lucky: the answers to our three questions did not conflict with one another. From everything we read, we felt the baby would have a miserable quality of life and would likely not survive longer than a few weeks or months. We were certain that continuing a doomed pregnancy would severely limit our ability to meet the demands of parenting Big A, then just two years old. I also feared the inevitable strain on my marriage and psyche. And healthwise, we knew it was statistically safer to terminate than it was to carry to term. For us, everything seemed to point toward interrupting the pregnancy as the best of two crappy choices.
Since the genetic counselor was the one who called with our bad news about the trisomy 18, she was the one that got to ask the question first: "Do you want to continue the pregnancy?" When I said I didn't think I did, she said she would call my OB for me and have her call me back shortly. In the meantime, I broke the news to my husband.
The rest of the family seemed truly shocked as we told them, almost as if it had not occurred to them that we were serious about the baby's likely problems when we'd broken the news earlier about screening positive (with a 1 in 5 calculated risk for T18) in the NT scan/maternal serum test. But DH and I were actually a little bit relieved at this point. Waiting for the diagnosis after the positive screening had been a special sort of hell. Now at least people would stop telling us to keep our fucking chins up. Now at least people would understand why we had been so distraught.
My OB called within the hour. She let out a deep sigh and said "I'm so terribly sorry." She asked me if I wanted to continue the pregnancy and I said no. Then I asked her if she thought this was a good decision, and she truly seemed at a loss for words for a moment, as though patients did not usually ask for her opinion in this matter. "Yes," she finally said. "I think it's a good decision."
We talked about my recent diagnosis of complete placenta previa -- a condition where the placenta implants directly over the cervix. If I went into labor with the placenta in this location, it would tear when my cervix dilated, cutting off the baby's oxygen and putting me at risk for extreme blood loss. Women with previas require a c section because of this. The perinatologist who did our amnio had diagnosed the previa and said that he didn't think mine would resolve on its own, so I should be prepared for a c section delivery if the baby turned out to be ok. Now that we knew the baby had a fatal disorder, I wondered if terminating the pregnancy could be done via the normal/common method (dilation and evacuation) given the complete previa.
My OB admitted she didn't know the answer to that question, but said she would find out for me. This is also when I learned that my own doctor would not be the one performing my termination. The idea of going to someone else was overwhelming, but my OB explained that she couldn't do it because she hadn't been trained to do the procedure that was needed at this point in the pregnancy. She said she knew two doctors that she trusted who could do it for me, though. She would call them and see who was available.
But we had a complicating factor: With Christmas just a few days away, there was a real likelihood the termination would not be scheduled until after the holiday. The idea of going through Christmas pregnant and knowing what was to come was just terrible. But I thanked her for at least warning me, so it wouldn't come as a nasty surprise.
Within a half hour or so I got another call. It was a the referral OB (whom for clarity's sake I'll simply call Dr. Surgeon here).
"I'm really sorry to hear about your baby," Dr. Surgeon said. "I wanted to let you know that I've rearranged my schedule and made some calls to the hospital and managed to get an OR and a team pulled together. I wasn't sure if it could happen at first because of the holiday schedule, but it looks like we can do the procedure tomorrow."
"Thank you so much," I said, choking back tears.
"You're welcome," Surgeon said. "You do have to come in today, though. We need to start dilating your cervix overnight so we can do the procedure tomorrow morning."
I hung up and quickly arranged to have Big A, then barely two years old, watched by relatives. We had opted not to tell her about the pregnancy until later, a decision that I was so thrilled about at that moment. At least our first discussion about death with her didn't have to be about this.
DH and I went to Surgeon's office. Surgeon was a regular OB, so her waiting room was filled with happily pregnant people and posters extolling how to conceive and maintain happy, healthy pregnancies. Luckily there were no windows to jump out of. We were also lucky that the receptionist had been briefed on our situation and didn't loudly interrogate us regarding the reason for our appointment.
We were shown into a room eventually and I was told to put on a gown. Surgeon arrived and talked for a few minutes. Even though we knew what the answer was, we asked if there was anything we might have done that had caused the trisomy 18, and Surgeon said it was just a random error -- probably I ovulated an egg that was poorly formed, and we had the bad luck of trying to conceive that particular month. Because I was nearly 35, the risk of it happening again was probably less than a two percent.
Surgeon explained that she was going to insert laminaria, sticks made of seaweed, into my cervix so that it would dry out and naturally dilate overnight. Since I was 16 weeks pregnant, she would only need to do laminaria insertions once -- later pregnancies need more. She said laminaria were more gentle than simply using mechanical dilaters during the procedure. "[Your OB] and I want to preserve your ability to have future vaginal deliveries," she said. Surgeon added that while I couldn't go through labor and delivery with a placenta previa, that I could have dilation and evacuation (or a "D&E") with it safely at this point.
"I know this isn't going to be the happiest Christmas ever for you," she said. "But, I think getting this over with before the holiday will be better than the other option." She said that we could try again as soon as I got a regular period back again.
Then, she told us about the D&E itself. It would be done under general anesthesia and take about 15 minutes. Most of the time I was in recovery would just be sleeping off the anesthesia. I would be in pain afterwards -- like a bad period. But regular Tylenol or Advil would take the edge off. She said to take it easy once I got home from the hospital for a day, and to resume normal activities as I felt up to it after that.
"There are a few possible complications," she said. "But they are rare. Statistically, D&Es are safer for women than giving birth. Things that might go wrong include that you might get an infection afterwards that requires antibiotics. Or you might need a D&C later on, if I didn't manage to clean your uterus out as completely as I should. Also, if I slip with an instrument there is a chance I could perforate your uterus." She smiled. "I've been doing this procedure for ten years, and I haven't perforated anyone yet. Likely everything will go just fine for you."
She asked if we had anymore questions before she did the laminaria insertion. I said I did. "Afterwards, I know we can't see the baby ... but could we arrange to have the remains cremated? Or could we at least get footprints to keep?"
Surgeon shook her head no. She didn't elaborate why, and I couldn't bear to ask.
Our decision was ultimately based on three factors: 1) What would the baby's quality of life be if we carried her to term? 2) What would our whole family's quality of life be like if we carried to term? 3) What scenario was the safest thing for me, healthwise?
In a way, DH and I were lucky: the answers to our three questions did not conflict with one another. From everything we read, we felt the baby would have a miserable quality of life and would likely not survive longer than a few weeks or months. We were certain that continuing a doomed pregnancy would severely limit our ability to meet the demands of parenting Big A, then just two years old. I also feared the inevitable strain on my marriage and psyche. And healthwise, we knew it was statistically safer to terminate than it was to carry to term. For us, everything seemed to point toward interrupting the pregnancy as the best of two crappy choices.
Since the genetic counselor was the one who called with our bad news about the trisomy 18, she was the one that got to ask the question first: "Do you want to continue the pregnancy?" When I said I didn't think I did, she said she would call my OB for me and have her call me back shortly. In the meantime, I broke the news to my husband.
The rest of the family seemed truly shocked as we told them, almost as if it had not occurred to them that we were serious about the baby's likely problems when we'd broken the news earlier about screening positive (with a 1 in 5 calculated risk for T18) in the NT scan/maternal serum test. But DH and I were actually a little bit relieved at this point. Waiting for the diagnosis after the positive screening had been a special sort of hell. Now at least people would stop telling us to keep our fucking chins up. Now at least people would understand why we had been so distraught.
My OB called within the hour. She let out a deep sigh and said "I'm so terribly sorry." She asked me if I wanted to continue the pregnancy and I said no. Then I asked her if she thought this was a good decision, and she truly seemed at a loss for words for a moment, as though patients did not usually ask for her opinion in this matter. "Yes," she finally said. "I think it's a good decision."
We talked about my recent diagnosis of complete placenta previa -- a condition where the placenta implants directly over the cervix. If I went into labor with the placenta in this location, it would tear when my cervix dilated, cutting off the baby's oxygen and putting me at risk for extreme blood loss. Women with previas require a c section because of this. The perinatologist who did our amnio had diagnosed the previa and said that he didn't think mine would resolve on its own, so I should be prepared for a c section delivery if the baby turned out to be ok. Now that we knew the baby had a fatal disorder, I wondered if terminating the pregnancy could be done via the normal/common method (dilation and evacuation) given the complete previa.
My OB admitted she didn't know the answer to that question, but said she would find out for me. This is also when I learned that my own doctor would not be the one performing my termination. The idea of going to someone else was overwhelming, but my OB explained that she couldn't do it because she hadn't been trained to do the procedure that was needed at this point in the pregnancy. She said she knew two doctors that she trusted who could do it for me, though. She would call them and see who was available.
But we had a complicating factor: With Christmas just a few days away, there was a real likelihood the termination would not be scheduled until after the holiday. The idea of going through Christmas pregnant and knowing what was to come was just terrible. But I thanked her for at least warning me, so it wouldn't come as a nasty surprise.
Within a half hour or so I got another call. It was a the referral OB (whom for clarity's sake I'll simply call Dr. Surgeon here).
"I'm really sorry to hear about your baby," Dr. Surgeon said. "I wanted to let you know that I've rearranged my schedule and made some calls to the hospital and managed to get an OR and a team pulled together. I wasn't sure if it could happen at first because of the holiday schedule, but it looks like we can do the procedure tomorrow."
"Thank you so much," I said, choking back tears.
"You're welcome," Surgeon said. "You do have to come in today, though. We need to start dilating your cervix overnight so we can do the procedure tomorrow morning."
I hung up and quickly arranged to have Big A, then barely two years old, watched by relatives. We had opted not to tell her about the pregnancy until later, a decision that I was so thrilled about at that moment. At least our first discussion about death with her didn't have to be about this.
DH and I went to Surgeon's office. Surgeon was a regular OB, so her waiting room was filled with happily pregnant people and posters extolling how to conceive and maintain happy, healthy pregnancies. Luckily there were no windows to jump out of. We were also lucky that the receptionist had been briefed on our situation and didn't loudly interrogate us regarding the reason for our appointment.
We were shown into a room eventually and I was told to put on a gown. Surgeon arrived and talked for a few minutes. Even though we knew what the answer was, we asked if there was anything we might have done that had caused the trisomy 18, and Surgeon said it was just a random error -- probably I ovulated an egg that was poorly formed, and we had the bad luck of trying to conceive that particular month. Because I was nearly 35, the risk of it happening again was probably less than a two percent.
Surgeon explained that she was going to insert laminaria, sticks made of seaweed, into my cervix so that it would dry out and naturally dilate overnight. Since I was 16 weeks pregnant, she would only need to do laminaria insertions once -- later pregnancies need more. She said laminaria were more gentle than simply using mechanical dilaters during the procedure. "[Your OB] and I want to preserve your ability to have future vaginal deliveries," she said. Surgeon added that while I couldn't go through labor and delivery with a placenta previa, that I could have dilation and evacuation (or a "D&E") with it safely at this point.
"I know this isn't going to be the happiest Christmas ever for you," she said. "But, I think getting this over with before the holiday will be better than the other option." She said that we could try again as soon as I got a regular period back again.
Then, she told us about the D&E itself. It would be done under general anesthesia and take about 15 minutes. Most of the time I was in recovery would just be sleeping off the anesthesia. I would be in pain afterwards -- like a bad period. But regular Tylenol or Advil would take the edge off. She said to take it easy once I got home from the hospital for a day, and to resume normal activities as I felt up to it after that.
"There are a few possible complications," she said. "But they are rare. Statistically, D&Es are safer for women than giving birth. Things that might go wrong include that you might get an infection afterwards that requires antibiotics. Or you might need a D&C later on, if I didn't manage to clean your uterus out as completely as I should. Also, if I slip with an instrument there is a chance I could perforate your uterus." She smiled. "I've been doing this procedure for ten years, and I haven't perforated anyone yet. Likely everything will go just fine for you."
She asked if we had anymore questions before she did the laminaria insertion. I said I did. "Afterwards, I know we can't see the baby ... but could we arrange to have the remains cremated? Or could we at least get footprints to keep?"
Surgeon shook her head no. She didn't elaborate why, and I couldn't bear to ask.
Monday, April 2, 2007
Backstory 1: The Beginning of the Bad
When DH and I decided to try to start a family, we both worried. I grew up hearing about my mother's multiple miscarriages and her heartbreaking stillbirth, so unlike many who naively jump into trying to conceive who figure that they'll be hatching a cute little baby bump in no time, I didn't think the sperm and egg would automatically get together post-haste.
So, when got knocked up the very first month we tried, I was happily shocked, but still nervous that my mother's infertility history was something she'd passed along. The first trimester every time I went to the bathroom, I was sure that I'd find blood in my underwear. But despite a terrible morning sickness that lasted for 20 weeks and then terrible leg swelling that lasted the rest of the pregnancy, things kept chugging along. Ten days past her due date Big A made her entrance into the world. While it wasn't a "textbook" perfect delivery, I had pushed her out by myself, and she was ok in the end, so despite the liberal oozing of both Big A's and my bodily fluids, I was pretty enthusiastic about the birthing process. I remember telling a delivery nurse "Oh, that was ... FUN!" after it was all over and she was cleaning me up. Labor had hurt like hell, but it was also so amazing and interesting that the only word I could come up with to describe it was "fun." While poor DH was fairly shell shocked and told me that he would understand if I never wanted to go through that again, I was certain that I wanted to have another baby at some point, even just hours after grunting through the marathon of contractions.
When we decided to try to get pregnant a second time, the whole issue of whether sperm and egg could get together wasn't something we dwelled on. In fact, DH and I were pretty blase about everything to do with the second pregnancy: we told people we were expecting before I was showing, and made lots of plans for the impending birth well before I was out of the first trimester.
I only had one nagging, quiet worry in the next pregnancy. There was no morning sickness. How could that be, I sometimes wondered. How could I be so sick for so long with Big A, but not have any illness to speak of the second time around? But it was easy to laugh off the worry, or ignore it. At least until my nuchal translucency and maternal serum screening test came back positive for Trisomy 18. We got the results when I was past the window for a CVS test, so we had to wait until I was further into the second trimester to get an amniocentesis to confirm or deny the findings of the screening test.
People throw around words like agony and torture cavalierly. But the agony DH and I felt during the three weeks between screening positive for T18 and confirming that diagnosis via amnio were agonizing and tortuous is an old school, biblical sort of way. The first time I read about Trisomy 18 online I nearly vomited and had to lie down for awhile. The phrase not compatible with life seared my brain. The description of the defects associated with the disorder were overwhelmingly serious and numerous. I had never felt so bleak.
Our friends and family did not grasp the depths of DH's and my desperation at first. They meant well. Really. But, they didn't understand that advising us to "just not think about it" until we had the amnio results was impossible. They thought sharing stories of neighbors and cousins and coworkers who'd gone through similar worrisome scenarios that had turned out just fine would give us hope, rather than alienate us. Every pregnancy has a scare, they'd say. Everyone made it really clear that they would be there to cheer for us when we got good news.
Nobody, not even my OB, brought up what the options would be for the pregnancy if it didn't turn out to be good news. No one at all felt we needed to talk about that right now.
In the center of that cloud of positivity and good intentions DH and I sat alone, frightened, bewildered. We had to figure out what to do next. We had to consider all the options, not just the good ones. Because whenever I had the courage to sit quietly with my thoughts about our situation, my instincts blew through me like an icy draft. I was fairly certain my baby was not ok.
Three days before Christmas the genetic counselor called us with the amnio results. She was jittery and stammered when announcing the news. I told her I wasn't surprised.
Everyone else was extremely shocked and horrified at the idea that the baby had a terminal disease. Nobody really knew what to say. Me, I had precooked Christmas dinner and wrapped all the gifts for Big A early, knowing that in all likelihood, her parents were not going to be up for last-minute shopping or party planning once they found out their baby was going to die.
So, when got knocked up the very first month we tried, I was happily shocked, but still nervous that my mother's infertility history was something she'd passed along. The first trimester every time I went to the bathroom, I was sure that I'd find blood in my underwear. But despite a terrible morning sickness that lasted for 20 weeks and then terrible leg swelling that lasted the rest of the pregnancy, things kept chugging along. Ten days past her due date Big A made her entrance into the world. While it wasn't a "textbook" perfect delivery, I had pushed her out by myself, and she was ok in the end, so despite the liberal oozing of both Big A's and my bodily fluids, I was pretty enthusiastic about the birthing process. I remember telling a delivery nurse "Oh, that was ... FUN!" after it was all over and she was cleaning me up. Labor had hurt like hell, but it was also so amazing and interesting that the only word I could come up with to describe it was "fun." While poor DH was fairly shell shocked and told me that he would understand if I never wanted to go through that again, I was certain that I wanted to have another baby at some point, even just hours after grunting through the marathon of contractions.
When we decided to try to get pregnant a second time, the whole issue of whether sperm and egg could get together wasn't something we dwelled on. In fact, DH and I were pretty blase about everything to do with the second pregnancy: we told people we were expecting before I was showing, and made lots of plans for the impending birth well before I was out of the first trimester.
I only had one nagging, quiet worry in the next pregnancy. There was no morning sickness. How could that be, I sometimes wondered. How could I be so sick for so long with Big A, but not have any illness to speak of the second time around? But it was easy to laugh off the worry, or ignore it. At least until my nuchal translucency and maternal serum screening test came back positive for Trisomy 18. We got the results when I was past the window for a CVS test, so we had to wait until I was further into the second trimester to get an amniocentesis to confirm or deny the findings of the screening test.
People throw around words like agony and torture cavalierly. But the agony DH and I felt during the three weeks between screening positive for T18 and confirming that diagnosis via amnio were agonizing and tortuous is an old school, biblical sort of way. The first time I read about Trisomy 18 online I nearly vomited and had to lie down for awhile. The phrase not compatible with life seared my brain. The description of the defects associated with the disorder were overwhelmingly serious and numerous. I had never felt so bleak.
Our friends and family did not grasp the depths of DH's and my desperation at first. They meant well. Really. But, they didn't understand that advising us to "just not think about it" until we had the amnio results was impossible. They thought sharing stories of neighbors and cousins and coworkers who'd gone through similar worrisome scenarios that had turned out just fine would give us hope, rather than alienate us. Every pregnancy has a scare, they'd say. Everyone made it really clear that they would be there to cheer for us when we got good news.
Nobody, not even my OB, brought up what the options would be for the pregnancy if it didn't turn out to be good news. No one at all felt we needed to talk about that right now.
In the center of that cloud of positivity and good intentions DH and I sat alone, frightened, bewildered. We had to figure out what to do next. We had to consider all the options, not just the good ones. Because whenever I had the courage to sit quietly with my thoughts about our situation, my instincts blew through me like an icy draft. I was fairly certain my baby was not ok.
Three days before Christmas the genetic counselor called us with the amnio results. She was jittery and stammered when announcing the news. I told her I wasn't surprised.
Everyone else was extremely shocked and horrified at the idea that the baby had a terminal disease. Nobody really knew what to say. Me, I had precooked Christmas dinner and wrapped all the gifts for Big A early, knowing that in all likelihood, her parents were not going to be up for last-minute shopping or party planning once they found out their baby was going to die.
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