Dear Mr. Sparks,
I want to share my story of being a mother to a baby girl born with a Congenital Diaphragmatic Hernia (CDH). Every mother's story is as different as our children. This is mine....
My husband and I had been married about 18 months when we found out we were going to be having a baby. I had an 11 year old son from a previous marriage and we had decided that we did not want to have any other children. My husband had no biological children but enjoyed fatherhood with my son. We were very happy with the size of our family.
I began to wonder if I may be pregnant. Well, I went to the doctor and it was confirmed. I was pregnant. We were not all that happy but I did not have a very positive experience with my first pregnancy. I was a teen mom with my son. I decided that God had blessed us and I was going to enjoy this pregnancy to its fullest. It took my husband until he saw the first sonogram for him to get on board. It took my son some time to get happy. He didn't mind at all being an only child for 11 years!
I had some problems with a large ovarian cyst during the last few months of my pregnancy and had 5 sonograms during these months. We also found out we were having a little baby girl! We now we were all excited. All seemed to be going well.
The doctor decided it would be best for me to have a repeat C-Section so we scheduled it 2 weeks earlier than my due date. He did require an amniocentesis to make sure her lungs were mature. They were and C-section scheduled. My mom and mother-in-law were also here from NC to be with us when she came into this world. Off to the hospital we went that morning.
Everyone was so excited. I was prepped, epidural in place and off to the delivery room we went. Cassandra "Casey" Carter was born. The doctor held her up so we could see her. By now happy tears were flowing. Her cry seemed different. She had a very squeaky cry. The nurses had swaddled her and brought her over for us to see her. My husband held her for just a minute when they said they needed to take her to the nursery because she was having some respiratory distress. They told us it was probably because she was cold. I didn't think much about it because being a nurse I knew this could be true and they needed to get her warmed up.
After they sent me to recovery my husband went to the nursery to check on Casey. The next thing I remember the phone was ringing at the nurse's station and something told me it was not good. The head nurse came in and told me my new baby girl was very sick and being transferred to Children's Hospital. My daughter was diagnosed with CDH. I completely lost it and then in came my mom, who did not know yet. She wanted to know what was wrong. Then came my husband who yelled at my mom to get out. He was explaining to me what was going on and then came the pediatrician who explained more.
He was telling us that our beautiful newborn baby girl was very, very sick. She only had a 5% chance of survival. He was going to ride in the ambulance with her because they did not want to wait for Children's transport team. I would not be able to see her again before she was transferred as she was too unstable. So off she went and I did not know if I would ever get to see her alive again. One of the best days of my life turned into the worst, a nightmare. My husband followed in his car. My mom stayed with me and a neighbor came and got our son. My mother in law somehow got to Children's to be with my husband. So within 3 hours of birth my daughter was in surgery at another hospital.
She came through her surgery but was still very sick little baby. We had to worry about all kinds of complications but she was still alive. That was what we had to focus on. We took it one day at a time. Since I had a c-section my doctor refused to discharge me so I could go and see her. My husband spent his days at Children's, tried to keep things going at home with our son and both of our mothers and his nights with me. Finally after 6 days, I convinced my doctor to discharge me. He did so with explicit instructions I was to go home. I am sure he knew that was not going to happen, so off to Children's we went. Walking through those doors as a mom is completely different than walking through them as a nurse. As a NICU nurse, you are not only responsible for the medical needs of the babies but also be a support system for the parents. Now I was a parent standing there next to the warmer needing their support. It gives you a whole new perspective when you become the NICU parent. There lay my beautiful baby girl who was becoming more stable even though she was still on the ventilator. Her eyes were open and we just looked and stared at each other. All I could do was hold her little hand and keep telling her how much I loved her and that she needed to keep fighting. My husband, both our mothers and nurses said it was time for me to go home. She was stable and everything was looking good. The nurses would us call if needed.
It was not until 5 years ago when I started researching effects of CDH on adult survivors, did I find CHERUBS. I was so thankful to find them. Since finding them we have found that even though each baby and family has a different journey they have very similar issues. It has explained so much that she has gone through over the years. I am also thankful that families do not have to take this journey alone any more. Through CHERUBS families have a support system and other parents that totally understand.