We saw the MFM specialist and she gave us the greatest gift of all. Hope! She did an ultrasound and reviewed my records and told us what she thought was going on. She said it was likely that our daughter had a chylothorax. And that a chylothorax is the most common treatable cause of fluid around the lungs. Hope! She said that there are places in the country that have experimental treatments for chylothorax. Hope! She said that babies with chylothorax that make it to term and survive the neonatal period have no lasting effects. Hope! It was just a matter of figuring out where to go and when they could see us. She decided to admit us over the week to monitor our baby while she worked to find us a hospital that would treat the chylothorax.
I spent the weekend in a hospital bed with a fetal heart monitor and a contraction monitor. I kept having irregular contractions, but since I couldn’t feel them they weren’t worried. She kept moving away from the monitor, mischievous girl, so my sleep was interrupted constantly as the nurses came in to try to find her again.
On Monday morning, I spoke to nurse coordinators at University of California, San Francisco and Children’s Hospital of Philadelphia (CHOP). We chose to go to CHOP because they seemed willing to not only see us, but do something for us. I made an appointment for 830am the next day. I was discharged from UCLA at noon and we raced to LAX to catch a 2pm flight to Philadelphia.
The next morning, Tuesday, May 20, we went to CHOP and had a day’s worth of tests. A very detailed ultrasound that took about an hour. It looked at every single detail of our little girl to make sure there was nothing anatomically that indicated a genetic abnormality. There was nothing. It was so detailed, we could see her hair. We had another echocardiogram. We met with a genetic counselor. Finally, we met with the doctor after he reviewed all the tests. He told us it was very likely a chylothorax. He wanted to remove the fluid surrounding her lungs. This would confirm the diagnosis and give lungs and heart relief from the pressure that the fluid was causing. A few minutes later I was taken back into a room with an ultrasound machine, sonographers and the doctor. I was told it would be like an amniocentesis. I hadn’t had one before, but had read that it wasn’t that painful. Well, this was more than an amniocentesis. They weren’t just putting a needle into my belly to remove amniotic fluid, they were also putting that need through my baby’s chest to get to the fluid. Of course, she moved, so the doctor had to move the needle around several times in my belly. It was very uncomfortable. I tried to stay so still. As soon as it was over, I started to sob. It was all so overwhelming. They took a lot of fluid from one side of her chest and sent it off to the lab. They also took some amniotic fluid for more genetic and infectious disease studies. I was put on the monitor for an hour or so to make sure she tolerated the procedure well and was allowed to go back to the hotel.
The next day we went back for a follow up ultrasound. Not surprisingly, the fluid had come back, but it wasn’t as bad as before. The test results were back and the diagnosis was confirmed as a chylothorax. We were scheduled for a follow up on Friday, May 23. This was going to be a watch and wait situation. If the fluid continued to increase, then I would be a candidate for the shunt placement. I was told to take it easy, but wasn’t on any specific restrictions. I was feeling a lot better. Removing the amniotic fluid lessened my polyhydraminos and I could feel a difference. My family in Baltimore was planning on coming up for the weekend, just to spend some time with us. I was preparing myself to spend the rest of my pregnancy in Philadelphia. I would probably have a few ultrasounds a week and that was probably the best place to deliver her. On Friday, we returned to CHOP for the ultrasound and the fluid was still there and had increased a bit. We scheduled the shunt placement surgery for the following Tuesday. The doctor that was going to perform the surgery explained everything to us. It would involve sedation, a small incision in my belly and the placement of the shunt in one side of her chest. I was very nervous, but I was excited too. The goal was to remove the fluid, take the pressure off of her heart and give her lungs time to mature more. I met with the neonatologist who told me about special formula that they put babies with cylothorax on since breast milk tends to exacerbate it. She also told me that 36 weeks would be our goal and even longer if we could. We went back to the hotel to relax and then decided to go to a Phillies game that night.
The next morning, May 24, I woke up and had some blood tinged discharge. I had never had that before and it freaked me out. I called the labor and delivery unit at CHOP and they told me to come in to get checked out. They put me back on the monitor and checked me. I was 1 cm dilated. Our baby girl was not doing well either. Her heart rate wasn’t optimal. I don’t remember exactly what the doctor said, all I remember was him saying that we needed to deliver her that day. Talk about a roller coaster of emotions. I went from being so hopeful and positive to being so devastated. This was the same doctor that was going to be doing the shunt placement. He wasn’t the OB/GYN on call that day but decided he wanted to do the c section. I don’t remember why he was there, but I’m glad he was. The other doctor that had removed the fluid earlier in the week was also there catching up on work and decided to assist in surgery. I met with another neonatologist who told us the likelihood of her survival was very slim, but asked us what kind of intervention we wanted. We said that we wanted everything done to try to save her, but if it wasn’t working, we wanted her brought to us. My family was already on their way for our weekend visit, but I called to tell them that I would be delivering her and to come straight to the hospital.
The flurry of activity that accompanies a semi-emergent c section began. I was given lots of medication, I met the anesthesiologist. Then I was being taken back to the OR. They gave me the epidural and before I knew it, they were starting the surgery. As soon as she was born, the neonatology team whisked her away to start working on her. They finished the surgery and took me back to my room. My family had arrived during surgery and were there to meet me. Sometime later, the neonatologist came in and told me they tried everything but her lungs were just too immature. She said that she was still alive and that they were going to bring her in.
I finally got to meet my baby girl. We decided to name her Madelyn Rae. Madelyn was one of the names we had talked about and she always kind of felt like a Madelyn to me. I don’t know how long I had her before she died, but she did survive for a little longer. She even made a few sounds. We were all in love, but so incredibly sad at the same time. We just sobbed. After a little while, the neonatologist came back in to listen to her heart and told us she was gone.
We were told we could keep her for however long we wanted. I wanted to hold on to her forever. My family got to hold her. I got to sleep with her that night. The nurses were wonderful! They took pictures of her, got her footprints and handprints. They cut a lock of her hair. They put together a memory box for us. All kinds of things that we could take home with us to remember her by. But of course, all I wanted to take home was her.
I refused to take any medication stronger than ibuprofen. The nurses kept trying to get me to take Percocet, but I didn’t want to be drugged. These were the only moments I was going to ever have with my baby and I wanted them to be as clear as possible in my memory. Besides, the physical pain was nothing compared to the emotional pain.
We kept Madelyn with us for about 24 hours. Letting the nurse take her away was the most difficult thing I’ve ever had to do. The pain of knowing that I would never hold her again and that I would never see her again was unbearable. It felt like a piece of me was being taken away. My arms have felt so empty ever since.
I was discharged the next day. We went to Baltimore to be with my family and have a funeral for Madelyn. The next week we finally got to come home. Boarding that plane with her ashes and the only memories we would ever make with her instead of her was horrible. In that moment I would have given anything to be carrying her onto that plane.
It’s been almost 3 months and it’s been the hardest 3 months of my life. Not a day goes by that I don’t miss Madelyn with every fiber of my being. Tomorrow would have been her due date. I should be miserably huge right now, begging my daughter to make her debut. Instead, I’m typing the story of her life and death through my tears. Life can just change in an instant.
My Heart, My Soul, My Madelyn 