Parker Maddox Stults was born on January 8, 2006. He was born at 35 weeks gestation weighing in at 6 pounds and 2 ounces and 19 ½ inches long. Parker was a very sick baby when he was born. We now feel that is the reason that he was so early. Immediately after he was born he was rushed into the NICU (Neonatal Intensive Care Unit) at North Kansas City Hospital. The pediatricians tried everything that they knew to do but Parker was really just to sick; he needed to be transfered to Children’s Mercy Hospital downtown. After four days at NKCH Parker was transfered by an ambulance.
Soon after being admitted to CMH the neonatologists told us that Parker had life threatening pneumonia and jaundice. However, they had no idea what was causing him to be so sick. Parker was not gaining weight, he could not nurse and he could not even maintain his body heat; he had to be under a photo therapy heat lamp 24 hours a day for almost 2 weeks! After about 3 weeks in the NICU Parker was released. He was 5 pounds and 2 ounces! He was so tiny. The preemie clothes looked like one of Brisan’s shirts he was so small.
After coming home he was still really sick, but getting better. Then when he was 2 months old his GI physician, Dr. Daniel, ordered to have a liver biopsy done. Little did I know at the time but a liver biopsy is a very serious procedure. Parker had his liver biopsy done and 4 days later he had another surgery. His general surgeon did Parker’s first hernia repair. Then finally after about 2 weeks later we got the results back from the biopsy. Parker was then diagnosed with Neonatal Giant Cell Hepatitis. It is a rare form of Hepatitis that produces fat deposits in the liver and spleen. There are no treatments but he was getting better. We were told that he would just have an enlarged liver and spleen for the rest of his life and that was fine.
Then again when Parker was ten months old he had to have his second hernia repair surgery. This is when we started to notice that he did not roll over, sit up, talk, or really do much of anything. Our pediatrician at the time placed Parker into physical therapy at CMH. It was not until Brisan was accepted into First Steps that we realized that Parker was also really far behind. Parker has now been enrolling in First Steps since March of 2007. He is currently getting Occupational therapy, Physical therapy, Speech Therapy and Special Instruction for 4 hours total a week.
Parker will transition to the school district early special education program in January. This should be a great time for him since he will be at the same school with Brisan. He too will get to ride the bus with his big “Bubby”!
This was a very easy process because he did not have to do as much medical testing as Brisan. We really made the choice to get a diagnosis with Brisan first and then test Parker for the same disease. Parker was diagnosed with Niemann Pick Disease Type C on September 24th, 2008.
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