We went to the twenty-two week check-up prepared to go straight to delivery if the baby’s heartbeat had stopped. My mom had purchased her plane ticket, packed her bags, and arranged her schedule so she could head out that day. At that point Leah wasn’t kicking yet, so the only time I felt movement was when she turned or rolled over, and it was sometimes hard to tell if she was moving at all. I often didn’t feel her for a day or two, so I was not always sure if she was still alive. That morning I woke up, after two weeks of hoping for resolution, and realized I wasn’t ready for her to be gone. Jeff agreed. As much as I wanted an easy solution, I wanted to keep my baby more, even if it was only for a little while longer.
The appointment began with an ultrasound, and it immediately revealed that not only did Leah still have a heartbeat, but it was still strong and well within the normal range. I was oddly proud. What a fighter. The specialist found her kidneys, which was a huge relief because missing kidneys entirely can indicate an inherited kidney problem, and typically points to an undiagnosed kidney problem in one of the parents. The specialist confirmed that Leah’s legs as well as both her arms were very small (about the size they should be at 12 weeks). The doctor and the genetic counselor explained that based on the shortness all four limbs and the ratio of her chest to her belly, her kidney failure and other problems were most likely caused by a lethal skeletal dysplasia. Basically, Leah’s chest was so small that her normal-sized heart took up nearly the whole space, thereby leaving no room for her lungs to develop. This change in diagnosis did not mean a change in outcome. Either the absence of amniotic fluid or the small size of Leah’s chest alone would be lethal. That Leah had both problems only gave the prognosis more certainty. In our meeting afterwards we learned about the lethal skeletal dysplasias, which are most commonly caused by an autosomal dominant gene, meaning that a mutation randomly occurs at conception. Although they couldn’t be sure what type of dysplasia Leah had, nothing in the ultrasound indicated one of the inherited (autosomal recessive) dysplasias.
Unfortunately the ultrasound did reveal another problem: a build-up of fluid in her abdomen called hydrops fetalis. They believed that this was caused by Leah’s system working improperly, which made her unable to manage fluid. This problem is progressive, and leads to heart failure. Once again they told us that the pregnancy could not reach full term, and that a still-birth would occur if we did not take any action. Our options were to deliver, have a termination, or come in for bi-weekly heartbeat checks until "the fetal demise." They advised that the window of opportunity was closing soon, since in Illinois terminations are illegal after 24 weeks. We had already decided that we would not terminate ever, nor deliver prior to 24 weeks, and we let them know that once again.
Neither of us felt very understood by our doctors. I got the distinct impression that the first doctor thought we were a bit deluded about our situation (which we were not, we understood and accepted the facts very quickly) because we wanted to continue to carry our child. The second doctor was more understanding, but was worried about how hung up we were on not having an abortion. However, we knew that if we induced at all it would only be for the chance to hold our child and comfort it while it passed away, something that would be next to impossible at 20 to 24 weeks. Delivery prior to 24 weeks was therefore not worth considering.
We were very concerned about the well-being of our baby, and when we met with the second specialist we discussed the comfort of the baby. He assured us that she would experience no discomfort in utero, and if she passed away due to the hydrops, as they suspected would be the case, it would be very peaceful. He also told us that he had witnessed babies with inadequate lungs after birth, and that in these cases they fall asleep from the lack of oxygen and slip into a coma, and that it was always very peaceful. They are able to fill what little lungs they have with air, so they aren’t gasping and flailing or anything like that.
Jeff and I began to debate our dilemma. Our desire as parents was to take the chance to spend a little time with our child outside of the womb. Jeff especially coveted that time, because he did not have a physical connection with out baby the way I did, and he longed for one. As a wife, I wanted that for him more than anything, but as a mother I was concerned that we do the absolute best thing for our child. We were both concerned that maybe we were being selfish to take a chance with our child’s life for the opportunity to hold it. A friend pointed out to me that although we couldn’t know, we should think about the possible benefit that delivery might have for our child. We wanted the chance to cuddle, hold, and talk to our baby, which we knew would be positive for us, but that being cuddled and loved might also be good for our baby. One thing that nagged at us was the feeling that we didn’t have enough information to make a decision. We had done tons of research, and found very little that indicated to us when the best time to deliver would be. We felt pressed to make a decision by the doctor’s pessimism about carrying to term, but had no idea when our time would run out.
From what we could see from grief websites and blogs, babies with Potter’s Syndrome could miscarry early, or they could live to term. It seemed that many people delivered between 32 to 36 weeks, due to medical reasons that affected the mother. We couldn’t find anything to tell us when to expect stillbirth due to the developing hydrops, which left us very frustrated. If we were going to deliver, it would only be so that we could spend time with our child. We had no desire to cut our baby’s life short prematurely if we could not offer it a chance at life outside the womb. We figured the best way to do that would be to carry as long as possible so that the baby would be strong enough and big enough to survive labor, but we also worried that if we waited too long we would miss our chance.
After another week and a half of agonizing over these questions, Jeff called the genetic counselor to ask if there was anyway to know what the timeline would be for our pregnancy. She told us that based on the last ultrasound, she thought we had some time left, but that with hydrops it was difficult to tell, because she had known of babies dying at 16 weeks from hydrops, or lasting into the 30s. Jeff asked if it would be wise to have another ultrasound when we came in for the 24 week check-up to measure the fluid accumulation since the last ultrasound. She said that might help give some idea of a timeline and she offered to schedule us for another ultrasound. From the two measurements they could assess the progress and rapidity of the fluid accumulation. From there they could offer us a speculative timeline of the baby’s health and the pregnancy. We were elated. First, we were very excited to hear that we might have more time, which was a huge turnaround from those first few weeks. Second, we were glad to have more information on which to base our decision. We felt that having a timeline would allow us to chose a date to deliver that would both sustain our child in the womb as long as possible and allow us to have some time with her after delivery. Hearing that we weren’t expected to have an imminent stillbirth (a cloud which had been hanging over us since the very first ultrasound) was a huge weight off of our shoulders. I unpacked my hospital bag.
The appointment began with an ultrasound, and it immediately revealed that not only did Leah still have a heartbeat, but it was still strong and well within the normal range. I was oddly proud. What a fighter. The specialist found her kidneys, which was a huge relief because missing kidneys entirely can indicate an inherited kidney problem, and typically points to an undiagnosed kidney problem in one of the parents. The specialist confirmed that Leah’s legs as well as both her arms were very small (about the size they should be at 12 weeks). The doctor and the genetic counselor explained that based on the shortness all four limbs and the ratio of her chest to her belly, her kidney failure and other problems were most likely caused by a lethal skeletal dysplasia. Basically, Leah’s chest was so small that her normal-sized heart took up nearly the whole space, thereby leaving no room for her lungs to develop. This change in diagnosis did not mean a change in outcome. Either the absence of amniotic fluid or the small size of Leah’s chest alone would be lethal. That Leah had both problems only gave the prognosis more certainty. In our meeting afterwards we learned about the lethal skeletal dysplasias, which are most commonly caused by an autosomal dominant gene, meaning that a mutation randomly occurs at conception. Although they couldn’t be sure what type of dysplasia Leah had, nothing in the ultrasound indicated one of the inherited (autosomal recessive) dysplasias.
Unfortunately the ultrasound did reveal another problem: a build-up of fluid in her abdomen called hydrops fetalis. They believed that this was caused by Leah’s system working improperly, which made her unable to manage fluid. This problem is progressive, and leads to heart failure. Once again they told us that the pregnancy could not reach full term, and that a still-birth would occur if we did not take any action. Our options were to deliver, have a termination, or come in for bi-weekly heartbeat checks until "the fetal demise." They advised that the window of opportunity was closing soon, since in Illinois terminations are illegal after 24 weeks. We had already decided that we would not terminate ever, nor deliver prior to 24 weeks, and we let them know that once again.
Neither of us felt very understood by our doctors. I got the distinct impression that the first doctor thought we were a bit deluded about our situation (which we were not, we understood and accepted the facts very quickly) because we wanted to continue to carry our child. The second doctor was more understanding, but was worried about how hung up we were on not having an abortion. However, we knew that if we induced at all it would only be for the chance to hold our child and comfort it while it passed away, something that would be next to impossible at 20 to 24 weeks. Delivery prior to 24 weeks was therefore not worth considering.
We were very concerned about the well-being of our baby, and when we met with the second specialist we discussed the comfort of the baby. He assured us that she would experience no discomfort in utero, and if she passed away due to the hydrops, as they suspected would be the case, it would be very peaceful. He also told us that he had witnessed babies with inadequate lungs after birth, and that in these cases they fall asleep from the lack of oxygen and slip into a coma, and that it was always very peaceful. They are able to fill what little lungs they have with air, so they aren’t gasping and flailing or anything like that.
Jeff and I began to debate our dilemma. Our desire as parents was to take the chance to spend a little time with our child outside of the womb. Jeff especially coveted that time, because he did not have a physical connection with out baby the way I did, and he longed for one. As a wife, I wanted that for him more than anything, but as a mother I was concerned that we do the absolute best thing for our child. We were both concerned that maybe we were being selfish to take a chance with our child’s life for the opportunity to hold it. A friend pointed out to me that although we couldn’t know, we should think about the possible benefit that delivery might have for our child. We wanted the chance to cuddle, hold, and talk to our baby, which we knew would be positive for us, but that being cuddled and loved might also be good for our baby. One thing that nagged at us was the feeling that we didn’t have enough information to make a decision. We had done tons of research, and found very little that indicated to us when the best time to deliver would be. We felt pressed to make a decision by the doctor’s pessimism about carrying to term, but had no idea when our time would run out.
From what we could see from grief websites and blogs, babies with Potter’s Syndrome could miscarry early, or they could live to term. It seemed that many people delivered between 32 to 36 weeks, due to medical reasons that affected the mother. We couldn’t find anything to tell us when to expect stillbirth due to the developing hydrops, which left us very frustrated. If we were going to deliver, it would only be so that we could spend time with our child. We had no desire to cut our baby’s life short prematurely if we could not offer it a chance at life outside the womb. We figured the best way to do that would be to carry as long as possible so that the baby would be strong enough and big enough to survive labor, but we also worried that if we waited too long we would miss our chance.
After another week and a half of agonizing over these questions, Jeff called the genetic counselor to ask if there was anyway to know what the timeline would be for our pregnancy. She told us that based on the last ultrasound, she thought we had some time left, but that with hydrops it was difficult to tell, because she had known of babies dying at 16 weeks from hydrops, or lasting into the 30s. Jeff asked if it would be wise to have another ultrasound when we came in for the 24 week check-up to measure the fluid accumulation since the last ultrasound. She said that might help give some idea of a timeline and she offered to schedule us for another ultrasound. From the two measurements they could assess the progress and rapidity of the fluid accumulation. From there they could offer us a speculative timeline of the baby’s health and the pregnancy. We were elated. First, we were very excited to hear that we might have more time, which was a huge turnaround from those first few weeks. Second, we were glad to have more information on which to base our decision. We felt that having a timeline would allow us to chose a date to deliver that would both sustain our child in the womb as long as possible and allow us to have some time with her after delivery. Hearing that we weren’t expected to have an imminent stillbirth (a cloud which had been hanging over us since the very first ultrasound) was a huge weight off of our shoulders. I unpacked my hospital bag.
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1 comment:
Again, thank you for sharing your story. Your love for Leah, for God, and for each other is so obvious and inspirational.
My prayers for you continue.
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