| My wife and I were expecting our first child and during our nineteenth week we had an
ultrasound, everything seemed to be normal. On January 19,1998 our world came crashing
down. My wife was in her 30th week and our family doctor gave me a call and said he got a
new ultra-sound machine and wanted to play with it. He told us to come over and he would
give us a free ultra-sound. He gave us a really long ultra-sound and everything seemed OK
until he stopped and took a deep breath. He told us that something was wrong. He said he
wasn't exactly sure, but he wanted to refer us to a specialist. He had no idea when he
called us that something was wrong but he was just helping us out. We went and saw a Perinatalogist. He diagnosed our child with Semi-Lobar Holoprosencephaly (Definition) and Hydrocephalus (Definition). The Perinatalogist advised us STRONGLY to "terminate the pregnancy", and went on to tell us that we would have to go out of state because SC laws would prohibit the "termination". He told us that he would approach the Attorney General to see if our case would be considered a "Partial Birth Abortion" because of the circumstances. He went on to explain that our child would die with-in a few hours of birth and that if she lived her "quality of life would not be acceptable". We told him that we not interested. He kept on insisting, so we change doctors. |
 Kerri at nineteen weeks. (Click on any thumbnail to see a larger image) |
|||||
| The new doctors gave us the same diagnosis of Semi-Lobar Holoprosencephaly and
Hydrocephalus, but they were comfortable with our decision of no abortion. They scheduled
us for an C-section and our daughter Kerri Elizabeth was born on March 16, 1998. She had
an apgar of 8 at one minute and 9 at 5 minutes (10 is a perfect score). The doctors were
very surprised and rushed her to the Neonatal Intensive Care Unit (NICU). This was not the
plan since everyone thought she was going to die within minutes. After a CT scan and genetic testing they decided that she did not have Semi-Lobar Holoprosencephaly, but that she only had a severe case of Hydrocephalus. At 3 days old they placed a shunt to drain the fluid off her head. Kerri spent 13 days in the NICU. Since then we have had 2 shunt revisions. The second revision they placed a Low Pressure Shunt. This has been working ever since. After her second surgery she started to have seizures. She continues to have these off and on. They placed her on Phenobarbitol. She was at the maximum level of Phenobarb and still continued to experience seizures so they have placed her on Tegretol. She has had two seizures that have required her to go to the emergency room and have them stopped with valium. |
 2 minutes old  NICU |
|||||
| On June 25, 1998 they did a Craniectomy to make the bones in her head smaller. Since
Kerri's head is so large she is unable to hold it up. She spent 10 days in the hospital,
because she had a lot of swelling and her wound refused to stop leaking. They had to
transfuse her for a total of 300 cc of blood during her 10 days. She continues to progress everyday. It is a slow progression, but she is progressing. We are not sure what her final outcome will be and we don't really care. They told us that she was going to die and she didn't. We are happy for every step that she makes, even if they are small. We have a good team of doctors that are taking care of her. They are concerned about Kerri and do everything that they can for her. We have a physical and occupational therapist that comes every week to work with her and to teach us how to work with her. |
 1 day after the Craniectomy  2 days after the Craniectomy |