Our families’ story with CDH: I grew up fantasizing about the day I would get married and have a family. In 2010, I did get married but a family, the most important thing to me, was pushed back for some reason or another. When the time came we decided to go for it, just to find that we had fertility issues. We thought we were going to need to do the most invasive fertility treatment, IVF (invetro), but we were blessed with Christian after one IUI (insemination).
The first half of my pregnancy went smoothly. I really wasn’t sick and besides being dead tired the first three months, it wasn’t that bad. I couldn’t wait to find out if I was having a boy or a girl. I just loved shopping, I couldn’t wait to buy cute little out fits and set up a cute themed nursery. I didn’t really buy anything because I wanted to get gender specific clothes. I just needed to know the sex of my baby. We found out it was a boy, but little did I know I would never really get to buy clothes, toys, or a crib for him.
At the 20 week ultrasound, I held hands with my husband anticipating the gender to be revealed, I felt like I waited forever to find out. We were told we were having a boy but the ultrasound took a lot longer and the tech had left to talk with the doctor. They later told us they needed better pictures, but she thought it was a Diaphragmatic Hernia. She said it wasn’t a big deal, just that he would need surgery after birth. We were then referred to a specialist.
I did some research on Diaphragmatic hernias to prepare myself, I found out that this was serious. I could of done all the preparing possible but nothing prepares you for hearing the number one option you have is to abort the baby you wanted so badly. A second option was offered… to go to a bigger hospital for a second opinion. It was confirmed that my son had a right-sided Diaphragmatic Hernia. They couldn’t see any lungs because his liver was up in the chest squishing his heart. I wouldn’t terminate, so I got the second opinion. The second opinion gave us a little more hope, 50/50 chance for survival. Though he was given 50 percent chance of survival, his prognosis was severe with a right-sided hernia versus left, liver up and small amount of visual lung on ultrasounds. After that, though there was some hope, I still mourned my child and the chance to have a normal pregnancy. I watched other women be excited about their pregnancy, while I was, as I explained “one foot in, one foot out”. I loved my child but I couldn’t fantasize about his first step, the first word he would say, or any normal experience because I didn’t know if I would take him home from the hospital. I loved carrying him, but I couldn’t hold onto the idea that I would get to keep him.
I went to an ultrasound every other week and then once a week. I loved seeing all the great ultrasound pictures and him moving around so much. Every ultrasound was a gift to be able to see him, but each time was very nerve wrecking also. By the end of my pregnancy, I ended up having very high amniotic fluid and had an increased risk of preterm labor. I left work early to make sure I was in the city where I was to deliver, which was two hours away from home. This was my first child. I didn’t know what to expect in delivery on top of the uncertainty of Christian’s fate. So many questions… Would he survive birth? Would they be able to stabilize him after birth? How long would he live?
After a long and dramatic birth, Christian came into the world on October 2nd in 2014. They were able to stabilize him; they wheeled him over to me. I touched his hand, but I don’t remember this very much. I was very scared of what was going on with me. I was having a postpartum hemorrhage and was losing a lot of blood (I ended up being ok). I later regret not paying more attention at this moment. I remember the first day I praised God every hour that I hadn’t gotten a call from the NICU about him getting worse. I so badly wanted him to beat this. Within 48 hours of his birth, Christian needed to go onto ECMO, a very risky lung/heart bypass machine. Life in the hospital was scary every moment. I was scared I would get him sick and I feared others would make him sick. I at times limited interaction for fear I would get him sick and he wouldn’t make it. I was afraid to be too loud or to touch him and make his pulmonary hypertension worse. I feared the numbers, seeing too many doctors in his room, afraid his stats would crash and he would die as I watched, and afraid to just open the doors of the NICU for fear of what I would see or hear. Even outside of the hospital, I felt I had to be ready to get news my son was gone. I couldn’t relax, I felt I had to always be on guard for bad news and I always felt bad I wasn’t in the hospital. I did this for four days, there are families that live in this fear for months in the hospital. Even the families that bring their babies home have different fears for their whole child’s life. Some see their child fight for months or years and then lose them.
I attended rounds every morning. Here doctors talked about babies and their treatment. I attended them even though it was scary me to hear them talk about all that was going on with Christian. It seemed every time during rounds Christian’s stats wouldn’t look good and they had to do something to help him. The last night he was with us, I was planning on reading a few books to him like I had the night before. I never wanted to leave the hospital with him not doing ok. So I waited but things only got worse. This was it. He was having internal bleeding from a chest tube from a pneumothorax while he was on ECMO. After four days, I finally got to hold my son. On the other hand, he was on a pillow still hooked up to the ECMO machine and I was saying goodbye to him. I never got to see his eyes open or feel him grip my finger.
Before having Christian, I didn’t know about CDH. We need more awareness to fight this. Families shouldn’t get a 50/50 chance left wondering all pregnancy which side of the coin flip they will be on. Or be scared living in the hospital hoping to leave the hospital, not knowing if they will come home to live a life with their child or come home to make funeral arrangements. I came home to make funeral arrangements. I will have to live a life without my son and have a family that will always be missing one of its own. Child loss is a lonely painful road a parent must go on and it is a road they will never truly leave. I am reminded daily my child is not here. It can be as simple as seeing a happy family, hear people talking about their children, seeing a smiling baby or a pregnant mom. No one can go around and not see these things because they are supposed to be happy things. Pregnancy and giving birth to a child should be the best experience in the world not one of the worst.
I hope that someday we will know more about CDH and can help prevent it, so that there will be one more car seat and one less grave. Or that there will be one more parent that gets to see their child open their eyes, smile at them, and grip their finger. Or one more parent that gets to see their child walk, talk, and go to school. This can all be possible for future parents, but we need help. We need more awareness and support to aid research. Raising awareness and funding research could help many future parents live a life with their child, not without. We can take a huge step forward with the help of Nicolas Sparks. Please Mr. Sparks, we need your help!
Nicole Clark from Iowa
Mother of Angel Christian Russell Clark