DeHart, Sara

[admin]

I received your newsletter in August. I would like to begin by thanking you for founding such an important organization. There have been so many times I had wished for an organization like Cherubs. I am writing a personal letter because I feel our family's story may be of interest to families of children born with CDH. After a pregnancy complicated with hyperemisis our daughter Sara was born on Aug. 7, 1989. At one-day-old she was diagnosed with CDH. She had surgery when she was 2 days old and did very well. A week and a half later she came home from the hospital with oxygen. She remained on oxygen until she was 2 months old. The day after she was removed from oxygen she received her 2 month shots and had a serious reaction. She cried so hard for so long, she reopened the hernia. Two days later she had a second surgery which required the use of a Gortex patch to repair the hernia. She came home a week and a half later without oxygen! She has experienced a minor kidney defect and slow growth but otherwise she's happy and healthy. It would be nice if our story ended here, but five years after our daughter was born, another family member was diagnosed with CDH. In December, 1994, my husband was diagnosed with an atrial septal defect (ASD) which is a defect between the atrium of the heart. The cardiologist also suspected a second problem which they thought was a tumor prior to surgery. My husband underwent open heart surgery to repair the ASD in January, 1995. Mid-way through the surgery, I was informed that what they thought was a tumor was really a Morgagni diaphragmatic hernia. The same as our daughter's! Both his ASD and CDH were repaired without the use of Gortex. He came home five days after his surgery and is in excellent health. When both my husband and my daughter had their surgeries, I tried to obtain as much information as I could. Unfortunately, the medical staff was not of much help. When asked if this defect was hereditary because two family members had it, I was told-"yes", "no", "maybe", and "I don't know"! Incidentally, our second daughter was born without CDH, but she has been diagnosed with Golden hars Syndrome, a cranio-facial syndrome. We have been told by a geneticist that her problems are not related to our others child's. We still have questions as to if our daughters could have children of their own with CDH. Any information you have would be helpful. Best of luck with your work in this wonderful organization.


Written by Sara's mom, Sue DeHart (Nevada)
1996