“The CDH baby who doesn’t know he is a CDH baby.”- Jim Beau's Story
At my 20-week ultrasound, I was told that we were having a boy and that I had a two-vessel umbilical cord (instead of three). Everything else was supposedly ok. My doctor said that the two-vessel cord was no big deal. It could cause growth issues as well as kidney issues. So, I would have to come back for another ultrasound at 30 weeks and after birth to check his kidneys. He said he had never seen anyone have a problem from a two-vessel cord. I went back at 30 weeks and that ultrasound was also supposedly fine -- the kidneys looked fine, and the baby's growth was ok.
Since then, I have realized that different doctors do different things when there is a two-vessel cord. We moved to a new state when I was 33 weeks pregnant, and I had my first appointment with my new OB at 34 weeks. He said that if I had been his patient from the beginning, and I had a two-vessel cord and was over 35, he would have sent me for a fetal echo at around 28 weeks.
Nevertheless, I do not know why both of Jim Beau's birth defects were not discovered at my 20 and 30 week ultrasounds. I can only say how grateful I am that they were discovered before he was born. At my 34-week appointment, the first in our new town with the doctor who would supposedly deliver the baby, Dr. Mixson listened to the heartbeat; it sounded a little strange. He got me an appointment the next day at a University of Florida diagnostic center in Jacksonville, FL.
This is all such a miracle to me. The heartbeat had never sounded strange before. And even a week later the heartbeat would sound normal for a while and then change. I think little Jim Beau was trying to tell us that day that something was seriously wrong, and we needed to look at him a little closer.
In Jacksonville, the ultrasound tech found the CDH. I remember her trying to explain to me what it was and how she seemed to feel very sorry for me. She called the doctor there at the center, but he told her I just needed to go to Gainesville. He didn’t even come up to see me! He just said, “She needs to go see Dr. Kays at the University of Florida.” I came back home and went back to see Dr. Mixson. His entire office knew what had happened. They all hugged me and told me they were sorry. Dr. Mixson had printed out some medical information about CDH for me and told me they were working on getting me an appointment in Gainesville.
The next day I had an appointment in Gainesville. I would see Dr. Douglas Richards who helps diagnose the severity of CDH through ultrasound and then I would meet with Dr. Kays, the surgeon.
Dr. Richards was very quiet while he did the ultrasound. He mentioned a few things that he saw and spent a lot of time looking at the heart. After he was finished, he drew me a diagram of what he saw. He said that it appeared to be a small defect with only the intestines up in the chest. He said the stomach was where it should be, as well as the liver. Then he told me that the reason he was looking so closely at the heart was because there was a VSD (ventricular septal defect) or hole in the heart. He said that they sometimes close up on their own, but that this one would probably require surgery. He handed me the diagram that he drew and sent me over to the hospital to meet Dr. Kays.
I only had a few minutes with Dr. Kays that day. He had worked me in since I was so far along in my pregnancy. He looked at the diagram that Dr. Richards drew and said my baby had an 85% chance of survival. What I remember most about that meeting was that when I walked into his office, he gave me a hug! It is hard to believe that I did not see Dr. Kays again until the day Jim Beau was born, yet I had the utmost confidence in him. He's just that type of person.
I remember that Dr. Richards asked me if I had already moved to Gainesville. I had to laugh! I had just found out about this problem. They wanted me in Gainesville two weeks before my due date in case I went into labor. So, at our next appointment we looked around at apartments. We ended up renting one that was within walking distance to the hospital. It was expensive, but because we are military, we got reimbursed for our expenses.
Jim Beau was born on November 30, 2009. We heard him cry a little bit before he was intubated. He seemed to do pretty well right from the start. He had his diaphragm repair 4 days later. It was a LCDH and his intestines, kidney and spleen were all in his chest. He was missing most of his posterior diaphragm, and Dr. Kays patched it with a Goretex patch. Jim Beau was on the ventilator for 13 days and on oxygen for about 30 days. Thankfully, Jim Beau was a model CDH patient. The nurses called him “the CDH baby who doesn’t know he is a CDH baby.” Once he was taking enough formula at each feed, we were able to leave the hospital on day 42!
Since then, Jim Beau has had no major complications or issues. As a baby, he could only take a small about of milk at a time so for about 2.5 years, I fed him in the middle of the night! Once he could eat solid foods, I would sometimes feed him a banana or yogurt instead of a bottle. He is a pretty picky eater right now as a 7 year old and gets gagged easily if he overeats or smells or sees a food he does not like. Other than that, he is a normal boy!