Faces of PKS
Stirling was born December 10 1996 in Honolulu Hawaii. In the summer of 1996 I was pregnant with my first child. I was very exited. We had the ultra sound done at 5 months along and I found out I was having a boy. What a happy moment for us! But the technician was acting strange and asked for a Dr. to look at the images itself. They said that they would like me to come back for another look in a few weeks. I got worried and could not imagine what they saw. When I came back they said that the sack of fluid in my baby's head looked large and that they would like to scheduled an amniocentesis. We did the test at 7 months along and waited for what seemed like forever for the test results. Turns out that my sample had to be sent to the main US because no results could be determined here in Hawaii. Eventually I was told my son had Pallister Killian Syndrome. I was told that it was very rare and that most babies were still born or die within their first year of life and I was given the option of late term abortion. We were devastated over the news and discussed it at some length. We decided that if this little guy wanted to live, we would give him every opportunity to do so and that we would love him no matter what.
So when time came, we had around 10 doctors and a chaplain in my delivery room waiting to see this very unusual baby being born and to give last rites if needed. It was very depressing I must say. I was not happy at all. After 26 hours of labor, my bright baby boy came into the world but I did not get to see him. They took him immediately away. I got word hours later that he had lived. God is good! A few days later, I finally got to see him in the PICU. He was under a hood because he was jaundices and was being tube fed. He was alive! He looked very much like a PKS child.His eyes were wide apart and his skin was translucent. His legs and arms were very short and he had a hole where his tail bone was, But he was mine and I cried the first time I held him. He was so bright I named him Stirling. So sets our journey.
Stirling has had a happy healthy childhood for the most part. He was diagnosed as cortical blind at age 1 year. That seems to come and go so he also wears glasses . It was determined he was deaf at birth but since has be determined he can hear loud sounds and high pitches and has been using a cochlear hearing aid. He never chewed his food so all his food was always pureed. He is incontinent to this day.He started having seizures at age 3. He dislocates his hips allot. He does the "froggy" thing. I think he likes it! So he has had 2 surgeries to repair but they did not last so we have given up on them. They are not worth the pain if he is not bothered by them. He also does the ballerina thing with his feet so he has also had 2 surgeries to lengthen his Achilles tendons to help with standing. He has had many ear infections because his ear canals are very tiny and has tubes put in every few years. He has had wonderful teachers and teachers aids throughout the years. He has always been a happy boy. In his teen years he has had a number of pneumonia's, a tracheotomy, G-tube put in, and had to be on oxygen.
He has become medically fragile but he is always smiling and in good spirits. He is loved and he knows it! He has 2 brothers, ages 13 and 11, and a baby sister age 2 years old that he lets know who's boss on a regular bases. He is big brother after all.
< Back to Face of PKS Kids Thumbnails