Anya's story so far...

We found out about Anya’s diagnosis at the second 20 week ultrasound that I had. A week before the tech had not been able to see everything, and as the doctor was not there, they asked me to come back the following week. I was extremely nervous, because something in the tech’s manner seemed odd. She talked about not seeing all of the cord and the heart, and did not reassure me not to worry. It was Arwen’s 4^th birthday party that week, and I had planned a big reveal at the party of the baby’s gender. For a while, I considered not doing it, but went through with it. A sense of foreboding followed me through everyone’s well wishes. Something was not right.

The doctor was very quiet when doing the second ultrasound. He kept zooming in on detail after detail, and after a while I was completely lost as to what he was looking for. When done he said to meet him in his office, where we would discuss what he saw. Time stood still, making me think of all of the times it had done so- when mom was diagnosed with cancer, when she died, and more recently, when Dad died suddenly after a prolonged illness. I thought bitterly that this was going to be another of those moments I would relive again and again.

He went over the findings, he was pretty sure it was congenital diaphragmatic hernia, when the stomach contents develop in the chest, compressing the lungs. I had not heard of it before, but my nurse background kicked in immediately- how was this child going to breathe?  He went on to describe some of the significance of the condition, but I really don’t remember what all was said. He was very concerned about the presence of a two vessel cord, said that it could indicate genetic problems, and an amniocentesis needed to be done. We did it right away, and then I was told to go home and rest, as not to irritate the puncture site. Kasey, my sister went with me that day, as Adam was out of town on business. He quickly got a flight back and was home that night, around three in the morning.  

We went to the Fetal Care Center at Cardinal Glennon, and after many tests (genetics normal, heart normal, growth normal) we were told that Anya’s case was very severe. Her liver was in the lung cavity along with her stomach and intestines, and her lung volume was 21% of normal. The neonatologist told us she would ‘always be behind the eight ball’ and that it would be ‘ethically optional’ to attempt treatment at birth. His concern was primarily separating her from us in a transfer, as he felt she would more than likely die shortly after birth.

Thankfully, weeks before, in one of my obsessive-compulsive search of the internet for CDH stories, I had found Dr. David Kays at Shands Medical Center in Gainesville Florida. He had a 92% success rate with CDH babies, national average was somewhere around 50%. I had contacted the office, and the same day, THE SAME DAY, mind you, Dr. Kays called me himself and we discussed Anya’s case for over 30 minutes. From what I was able to tell him he thought she would have a chance.

So a when the neonatologist at Glennon tried to prepare us for the death of our child three months before she was born, I did not cry. I asked the doctor and the counselor they had thoughtfully provided to leave the room. Adam and I faced each other and decided we were not done. We were not giving up on Anya, and we were not going to let anyone else give up on her either.

We flew to Gainesville when I was 26 weeks pregnant to see Dr. Kays. He spent 3 hours, THREE HOURS, discussing Anya’s case. Yes, she was severe, yes, she would be a challenge, but she did have a chance. He thought perhaps 65% chance at survival and 90% chance if she survived that she would lead a normal life. He was, he is, such a contrast to what we heard at Glennon- he lined up to us his expectation to how her care would progress after birth- immediate intubation, of course, but then surgery hopefully within 48 hours of birth. She will more than likely need ECMO (heart and lung bypass). The first six weeks are the saving the baby’s life period, and the second six weeks are working on feeding issues and growth. CDH babies have lots of feeding issues; they often have severe reflux, because the stomach is all kinked up they are not able to swallow in the womb, then they spend the first several weeks with tubes in their mouths. Many go home on oxygen and tube feeding.

I could care less about how long she is on ECMO, if she needs tube feeding, or oxygen. I can work with that, especially if I get a live, trouble-making child out of it. I am sure at the time I will curse God and the heavens, but it will be a short term problem if she survives.

Right now I am 27 weeks, and in the process of getting a backup plan here in STL if I go into premature labor- I see specialists at Children’s next week. I don’t mean to make Glennon sound like a bad place, I know they do good work every day, but they do not have the expertise or the confidence that they can treat Anya effectively; therefore I will not let them have anything to do with her. I go to Gainesville for a follow up OB appointment on June 11^th, and I will be induced later that week. My due date is July 4^th, but she will be full term even delivering that early.

The biggest fears I have right now are with Arwen- what will this do to her? She will stay with my in-laws, a blessing, if ever there was one. Ruth watches her when we are at work, and their house is a second home to her. She will have a sense of normalcy through this, even though I know she will miss us, at least I hope. We won’t be a family together for a long time; they expect the NICU time will be 2-3 months.

So much is falling into place though- Shands takes my insurance, Adam will be able to telecommute, we can stay at the Ronald McDonald house for $10 a night, I may be able to get short term disability to protect my job and to help retain my insurance through a prolonged absence. I keep hoping that this indicates that God has something else in mind than Anya dying.

 I have given her up to God, with the knowledge that I have been doing everything I can to give her the best chance. When you think about it, as parents that is all we can really do. You never really know what you are going to get when you have a baby. They can look great when they are born, then have severe learning problems when they start school. They can have a lovely childhood with all the proper support and education, and end up an alcoholic. All we can do is give them the best we know how and then leave the rest to them. In the end it is going to be up to Anya to beat this. She is the one who will need to make the transitions from the vent, off the meds, recover from surgery. I plan on being with her every step of the way.