Breanne's Story - Congenital Diaphragmatic Hernia (CDH)

At 40 years old, I never dreamed I would become a mom for the third time. I already had two girls ages 14 and 19 and wasn’t planning for any more. Imagine my surprise when I saw the positive sign on the pregnancy test. I cried, I laughed, and I began preparing to start all over with a new baby. Because of my age, I had to be seen by a high-risk Dr., so at 14 weeks, I went in for an ultrasound and to find out the gender. It had been so long since I️ had one that I didn’t realize this one was taking longer. She informed us it was a girl and sent us to a room to wait for the Dr.; I still had no clue anything was wrong. Her dad and I were laughing about having another girl (this would be the fourth girl between the two of us), and trying to think of names. When the Dr. walked in, he informed us that he didn’t see anything that would lead him to suspect Downs, but our baby girl did have a birth defect called Congenial Diaphragmatic Hernia, CDH for short, and that is when the laughter turned to tears. He immediately told me he knew of a specialist in Florida that could help us and if he had a baby with CDH he would go to this specialist, Dr. Kays. The high-risk Dr. set everything up and a few weeks later we had our appointments with the OB Dr. and with Dr. Kays in Gainesville, FL. Once the ultrasound was done, we were informed that most of her organs that were supposed to be in her stomach were in her chest. Dr. Kays let us know she had a severe case of CDH. I was impressed with him from the minute we met him. Sitting in his office looking at all the baby pics on the wall and asking about them, he knew every single one of their names!! I knew right then he was our Dr. We returned home with the feeling that our baby was going to be okay. I had my routine appointments with my regular OB on top of my high-risk appointments, and the days turned into months.

At about 6 ½ months, I started to have contractions and was put on bed rest. At about 7 months, I received a phone call from my sister that our mom who had been battling colon cancer had taken a turn, and I️ needed to get to Tennessee right away. My girls and I got on a plane that night to Tennessee. When we arrived, my mom rubbed my belly so gently and told me she was worried about me. The next day was Thursday, and we spent the day with our mom at the hospital laughing, crying, and just enjoying each other. Friday morning Breanne’s grandma became her guardian angel. That was November 5th.

On November the 18th, I was at work and wasn’t feeling Breanne move like normal, so I went to the Dr. I was sent to labor and delivery and that night I was being flown to Shands Hospital because my contractions were not stopping. I was in the hospital for a week being monitored, and I was discharged with orders that I needed to stay in Gainesville. I got a room at the RMH and got settled in for the long haul. For three weeks, I had two liters of fluid taken off because I had so much that I physically could not do anything myself and was having a hard time eating. I had been dilated to 2cm for a few weeks, so on Dec. 14th when I started having pains, I decided it was nothing and went about my day. The pains lasted all night but were never real bad, but I decided to get checked out, by this time it was Dec. 15th. I was hooked up to the monitor and checked and the Dr. asks me how many was I dilated to before I told her and much to my surprise I was at 9cm dilated!

I started freaking out knowing her dad wasn’t going to make it in time and not knowing where Dr. Kays was. They wheeled me into the OR and in comes Dr. Kays, I was so relived. The C-section was performed and when they took her out it was silent. I turned to see them working on her and heard a nurse counting. I wasn’t sure what she was counting at first. I then realized it was the minutes Breanne was not breathing, my baby was blue. At 5 minutes, they rushed her out without me getting to see her. I was in recovery waiting on Breanne’s dad to get there when in walks Dr. Kays. He informed me that Breanne had to be put on ECMO immediately after birth which isn’t good and that usually kids that have to be put on it that soon don’t make it. I was devastated. After that whole day and into the evening, we finally got to see our baby girl. To say it was overwhelming is an understatement. Here was this tiny baby that you couldn’t even see for all the machines keeping her alive.

The next day Breanne developed a grade 1 brain bleed and Dr. Kays informed us that if it got worse, she would not make it. Thank God it never got worse. Breanne went through quite a bit while being in the NICU for 3 ½ months. She had three ECMO circuit changes, the cannulas being pulled out of her neck and losing a great deal of blood, 34 days on ECMO, (the longest a baby had been on ECMO at that point at Shands and lived was 35 days). I finally got to hold her at 6 weeks. We learned she had a chromosome deletion and was told based on all that she had been through she may never walk or talk and that was when we had to make one of the hardest, biggest, decisions of our lives. We chose to let her keep fighting and that is exactly what my baby girl did. She underwent gallbladder surgery, g-tube surgery, and the Nissen Fundoplication surgery before going home at 3 ½ months on oxygen and a feeding tube. Breanne developed hydrocephalus as a result of ECMO. She had two brain surgeries before she was 1. She was hospitalized that first year with RSV, GI issues, and the hydrocephalus. She finally came off of oxygen at 19 months, and her feeding tube was removed at 2 ½ years old.

At 7 years old, now Breanne has beaten all the odds. She does have some delays physically and has to see multiple therapists. However, her IQ is too high to be in a special class, so she goes to a normal school and can do most of the things her peers can do. It took her a while to walk, but with the therapy help and AFO’s, she is now running and participating in gymnastics. She makes me a better mom and person everyday and never gives up, no matter the obstacle.