On February 14th 2010, I gave birth to two beautiful little girls named Kennedy and Columbia. Shortly after their birth we were told that Kennedy was born with a Congenital Diaphragmatic Hernia (CDH).
While I was pregnant we were never told anything about Kennedy having CDH. When Kennedy was 4 days old she underwent surgery to repair her hernia. In addition to the CDH she also had bowel malrotation. They were able to stitch the hole in her diaphragm and she did not need the Gortex patch. Kennedy was on a ventilator for about 1 1/2 weeks. A lot of CDH babies are put on ECMO, but Kennedy was too small for it. When Kennedy was 3 weeks old they discovered part of her bowel was kinked and they had to do another surgery to unkink it. She was discharged from the NICU after 6 1/2 weeks.
Kennedy had severe reflux and it was very hard for her to gain weight. She threw up everything she ate and was a very sick little girl. When she was 3 months old she was admitted to the hospital for poor weight gain. Kennedy weighed 3lbs 12oz when she was born and at 3 months she was barely 6lbs. We were unhappy with the care she was recieving at our local hospital and had her transferred to a bigger children’s hospital in Columbus Ohio. Having her transferred was the best decision we ever made. They took such good care of her there and really listened to our concerns. The surgeon there decided that Kennedy needed a Nissen Fundoplicatin. This would make it so she wasn’t able to throw up, thus retaining her food and gaining weight. Kennedy had to spend about 3 weeks in the hospital prior to surgery. She needed to show steady weight gain and get her weight up before they could do the surgery. Finally when she was 4 months old they did the Nissen. They also put in a g-tube to use for feedings before she could take feedings by mouth. Now she is a happy and active 15 month old!
Her feeding tube was taken out at 13 months and she has been doing great without it! Babies born with CDH only have a 50% survival rate and the ones that do survive usually have a lot of health issues. We were so blessed that Kennedy survived and that she doesn’t have any other health problems.