Jamie, at 32 Weeks

Posted on Posted in Fetal Hydrops, Induction/L&D, Polyhydraminios, Termination after 24 weeks
balloons in the sky
Every year we make cards for Jamie’s birthday. We attach them to balloons, sing to her and release the balloons.

My husband and I weren’t yet trying for number three, but we always felt there would be one more baby for us. God had just decided it would be sooner than we’d thought. Little did we know where this was going to lead.

My first trimester was met with extreme nausea and bleeding. Every time I had a heavy bleeding episode, I would think, This is it, this baby isn’t going to make it. My kind and understanding OB brought me in twice a week to see my baby, to let me know she was alive and kicking. Each time I saw her, I stared in awe. In my heart I could hardly believe she was really there. At 16 weeks, my OB referred me to a perinatologist because of my bleeding, as she thought I had placenta previa. I spent several weeks in bed, well, as much as one could with a two-year-old boy and four-year-old girl.

At my 19-week ultrasound they said there was no placenta previa, and in fact, everything looked normal—and it was another girl. My kids would have a baby sister. The perinatologist was the top doctor for our hospital, so I relied on him to help me decide whether to have the amnio. I would be turning 35 one month after the baby was due.

At my 20 week OB appointment, my OB said the report from the perinatologist was fine. I shared with her that I felt he hadn’t really done as an extensive sonogram as I’d thought he would do based on my age. She phoned him while I sat there and he told her he was confident in his report as everything had measured within normal limits. I thought it was strange that her legs and arms were right on target with my due date, yet her head circumference was two weeks ahead. My other children always measured two weeks ahead with their legs but were in the 50th percentile for their heads.

I told my OB, “I’ve just always had a doom and gloom feeling about this pregnancy. Should I still have the amnio?”

She said with the top doctor doing my sonogram and telling me all looked great, an amnio was an unnecessary risk. I tried to relax.

At 20 weeks, I was still not really showing. I had a small baby bump, but hadn’t “popped.” We’d attributed it to my weight loss from severe morning sickness. Then suddenly at 25 weeks, I was huge! I measured about four weeks ahead, but my OB said, “Third baby, don’t be concerned.”

I started having pre-term labor at this point and was put on terbutaline and procardia. It seemed no matter what I did, my uterus contracted. I called her again at 28 weeks to inform her I was having huge and the contractions that, although not painful, were not stopping.

When she saw me at 29 weeks my OB said, “Wow, you are huge.” I was measuring about 8 weeks ahead at this point. She did a quick scan and said, “There is a boatload of fluid in there.” I was 1 cm dilated and 80% effaced. She sent me straight over to the perinatologist. I had a bad feeling in the pit of my stomach, and I was alone that day.

The perinatologist performed another sonogram on me. He said my cervix was short and thinned out, and I definitely had polyhydramnios. The baby seemed fine however. He then spent the next for 45 minutes looking at her heart. He said it seemed to be in the wrong place but he couldn’t find any reason for this, such as a visible hernia or lung malformation. He said likely she’d need to be delivered at Hopkins as she’d need surgery right away to fix these malformations. He printed out a few 3D pictures for me and told me to come back in a week.

Something didn’t look right in the pictures. Her fingers looked really strange, but…what did I know? I tried not to worry and my husband tried to reassure me. At 31 weeks we went together to see the perinatologist. The baby’s heart looked the same to him but he now noticed she had frontal bossing, which meant her forehead was very enlarged. He turned the machine off, told me to get dressed and for us to meet him in his office.

“You’ll need to go to Hopkins and I’ll arrange it as early as possible. Your cervix is now 3 cm dilated, bag of waters is bulging. The frontal bossing…well, it is only associated with very rare syndromes. There is nothing more I can tell you.”

We were devastated but had no idea what was wrong with her or what it meant, so we held our breath and prayed. Hopkins called the next morning with an open appointment that day. We called a sitter for the kids and drove to Baltimore, not knowing that our world was about to come crashing down on us.

After a lengthy sonogram, we were told the horrible news that our baby girl’s brain had not formed properly and was mostly missing. She also had many other abnormalities. Her heart was located in the center, instead of on the right and she appeared to be missing an outflow tract. Her stomach never emptied, her kidneys were completely enlarged, she had fetal hydrops, her eyes were spaced too far apart, her hands remained clenched and she did not move. Her head was as large at a 42 week baby and had pockets of fluid. My amniotic fluid levels kept increasing as she was unable to swallow.

We were told that the best case scenario for her was a vegetative state and the worst was death. Should she survive, she would never achieve any milestones; nothing even as simple as a voluntary smile.

The doctor just kept saying, I’m so sorry. At this point, I was 32 weeks pregnant.

They told us that regardless of her brain abnormalities, if she was born alive the the doctors would be forced to make life-saving decisions for her and she would be faced with many surgeries.

They said there was a doctor in Kansas who did late term terminations due to fetal anomalies. We made all the arrangements to fly to Kansas that next week. .We cried a lot and began to grieve for our sweet baby girl. The more I looked at her pictures, the more I knew I could not allow her to suffer. All week, we prayed I wouldn’t go into labor.

When we arrived at the clinic, we drove by protesters who held up graphic posters and shouted at us. All I could think was, What makes you think you know what is best for every baby? How could life in a vegetative state be better than arriving in the arms of Jesus without having to ever suffer?

We went through security and the guard was very kind. We were all brought together to watch a video on why this doctor chose to start this clinic and what it was all about. I didn’t like having to face all these other people. There was only one woman further along than I. We met with a counselor, and then the doctor. We had a sonogram done to confirm everything. Then I was sedated, which also sedated the baby. The doctor injected our baby’s heart with a medication to stop it. I didn’t remember any of it because of the sedative. They had also inserted laminaria to further dilation. The doctor felt that I would probably deliver the next day.

We went back to sit with all the other couples who were there. At this point, everyone started talking and crying together. We were not alone. We were all terminating the life of a very much wanted baby. We were all saying goodbye to a child who we would never get to know in life.

I was warned later that day by the doctor that I might go into labor quickly and to be very aware of my body. Some women apparently have delivered at the hotel. It was so strange to not feel her movement anymore. I was glad I had said good bye to her the night before.

I awoke early to contractions that were pretty uncomfortable. I showered and we headed over to the clinic. We were the only couple there. The doctor had been fairly certain I’d go quickly. When they checked me, I was 4 cm dilated. He broke my water and left. Moments later I told my husband that I felt a lot of pressure and to get the doctor because the baby’s head was coming out. They wheeled me into delivery and sedated me. I reacted badly to the medication and at one point; my husband thought he was losing us both. Our daughter was born 30 minutes after I arrived at the clinic.

We were able to see her later that day. It was disturbing to see her, yet she was quite beautiful. She had many visible abnormalities and her coloring was very poor since she was not alive. It was a hard thing to do, but seeing her made me realize for sure that she was in a better place. Her body was just too broken to hold the kind of spirit I knew she was meant to be. When I picked up her tiny hand, I saw that it was webbed, just as the doctor had warned us about. So were her feet.

It was a year before I no longer had to cry every day. I don’t know if I will ever stop feeling like there is a piece of our family missing. But when I look at my two healthy children I know I made the right decision. Had Jamie lived and required around the clock medical care, surgeries and no semblance of normalcy, we’d all have broken hearts.

At my daughters suggestion, every year we make cards for Jamie’s birthday. We attach them to balloons, sing to her and release the balloons. She will never be forgotten. She is a part of us and always will be. I still feel extreme guilt, terrible loss, and relief that she didn’t have to suffer. Despite the shame we were forced to feel when we had to escape and run away to do what we felt was the best choice for our baby, I know I would do it again if I were ever faced with the same situation.

 

 

 

 

photo credit: up up away via photopin (license)