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Congenital Diaphragmatic Hernia: James' story
My husband and I waited 18 years to have a child. So when I found out I was pregnant, we were so excited. We love children and now we were going to have our own. Sadly, during a routine sonogram we learned there were going to be serious complications. It was obvious to the doctor preforming the sonogram that my son’s organs were not where they were supposed to be. He had a hole in his diaphragm and some of his tiny organs such as his stomach, intestines and spleen, had migrated into his chest cavity.
The official diagnosis was CDH (congenital diaphragmatic hernia). This was a condition we had never heard of, nor were we prepared to face. It was crushing. We left the doctor’s office numb and unsure of what to do. We knew immediately we needed to do our research and find our son the best hospital, as well as the best doctors to care for this potentially life-threatening condition.
After a lot of research on what CDH is and how it is treated, we began looking for hospitals and surgeons that specialized in this condition. We soon were in contact with Dr. Olutoye at Texas Children’s Fetal Center. We immediately set an appointment and drove in from San Antonio and met with Dr. Olutoye. He and his staff answered our many questions and although we still had plenty of fears, when we left his office we were confident we were at the right place for James. We were given the assurance that they would do everything they possible could to care for James and repair his little body.
With that assurance we moved to Houston and made arrangements for James’ care. The pregnancy was far from perfect despite all the effort to get me to term, I went into labor when I was 31 weeks. This was the last thing we wanted, since his lungs would be underdeveloped and they were sharing the space with many of his other organs. So, at just 31 weeks and James at only 3 lbs. this was it; his birth day. Within a few hours our ears were filled with the most beautiful sound we ever heard, James cried, it was brief and soft, but we heard it. That renewed our hope that things would be OK. Not over by a long shot, but another milestone was reached.
Within seconds, a great team of doctors were rushing James away. He was intubated and eventually had to have a trach, as well as a g-button put in. For the next six months we had a roller coaster ride of emotions. There were good and bad days, great and horrible ones as well, after 6 months in the NICU we were going home. However; because of his unique anatomy and despite a couple of long surgeries to repair his diaphragm, they were never able to get his organs where they “belong.”
The plus side is James was progressing and doing well so the thought was, “why do we have to make him like everyone else?” His body is unique and it works, not perfectly, but enough for him to lead a good and happy life. If surgery is needed in the future, we can cross that bridge then.
We are indebted to the surgeons, doctors and nurses at Texas Children’s. We truly do not know what we would have done without them. They, along with our strong faith, made a seemingly unbearable situation bearable. My husband and I are Jehovah’s Witnesses and as such we have been taught the importance of prayer and strong faith in getting through a difficult situation. We have also been taught the importance of great nurses, doctors and hospitals. We felt we found that at Texas Children’s. Our son James still has medical issues, yet those who know him will agree that he is one of the most loving and loved people you could ever meet. He has come a long way and has a long way to go; however, our family is doing well. We are united in our love for each other, as well as our deep appreciation and love for those who worked so hard to care for our precious son James.