Simon Christopher Peters
Born: December 3, 2004
Place: Marshall, Michigan - USA
My name is Gretchen, here is how we began with PKS.
Simon is our 5th child. He was due on December 8, 2004. His story began when I went for my routine ultrasound 20 weeks into my pregnancy. During the ultrasound the tech noticed 3 areas of concern: short long bones, a cleft lip and enlarged brain ventricles. After my ob told us this (scary!), we decided to have an amnio done. The FISH test was negative for trisomies 13, 18 & 21, so we thought we were of the hook. When the full results of the amnio came in, it indicated a mosaicism, which the lab thought involved chromsome 12. Results were inconclusive so the cells were shipped to Mayo Clinic. They verified that there were 2 extra copies of the short arm of chromosome 12, which means our baby had Pallister-Killian Syndrome, which is quite rare. Finding out this diagnosis was devastating. Who believes it will happen to them? How do you tell people? Thankfully I had Jim to keep me calm. We had no idea what the future would hold for our baby, so we tried not to worry. Two things kept me sane during this time, prayer and faith in God and I was fortunate to find an on-line support group with some wonderful people who were more than glad to share information and answer my questions.The pregnancy was very stressful, I was off work from Aug to Dec. Medically, though, both me and the baby were doing fine. It was the not knowing. We did end up having 2 more ultrasounds and by the 3rd one, we were sure of the cleft lip and short bones, but the brain ventricles had moved into the normal range. I had a c-section planned for Dec 6 (due to having had one previously). We decided to deliver at our local hospital as medically there appeared no need for a NICU.
December 2, 2004. I stopped feeling movement from the baby, so I ended up going into the hospital for monitoring. The baby's heartbeat seemed steady, but I wasn't feeling it move (we still didn't know boy or girl!). The doc decided to give me my c-section early. Simon Christopher Peters was born at 1:46 pm on Friday December 3, 2004. He was 8 lbs 12 oz and 19 1/2 inches long. He came out crying and with APGARS of 7 and 8. However he was having trouble maintaining his oxygen levels so he went into an oxygen tent. He also had a heart murmur that healed itself by that night. Later that evening, his doctor decided to send him to a hospital with a NICU.
Once at Bronson, Simon started having bouts of apnea. He would just about stop breathing for 1-2 minutes and then come out of it. They gave him an EEG which was "not quite normal" but also didn't show any seizure activity. As a precaution he was started on Phenobarbital. He also was given a feeding tube, we assume, because of the cleft lip. By Sunday, his apnea episodes were gone and he was off all monitors by Tuesday. He remained slightly unable to maintain his body temp and kept his feeding tube, but other than that, he was ready to go home! All in all, Simon stayed for 6 days.
~~~~~~~~~~~~~~~~~~ Fast forward to June 14, 2005
Simon is now 6 months old. My guess is he’s about 3 months behind at this point. He still has very good muscle tone. He responds to our face and voice—likes to smile at us! He is gaining good head control and is beginning to eat cereal/baby food. He drinks his bottle on his own—about 7 oz. He had his cleft lip repaired at age 2 mo and will have the cleft gumline repaired when he is 8-10 years of age. We’re working on getting him to respond better to visual and auditory stimuli. He doesn’t want to lift his head much on his tummy, even though he’s capable of doing so. He doesn’t reach for toys and when you hand him something, he doesn’t really care. He wears hearing aids in both ears and has a small amount of nystagmus which is improving all the time.
Being his mom is a wonderful thing, even though if God granted me a wish it would be to have Simon whole and healthy. PKS is not a diagnosis of doom; many of the children do quite well. Simon is doing far better than I hoped he would based on information I found online when I was pregnant. Simon is blessed to have a big brother (Alex) and 3 sisters (Emily, Maddy, & Natalie) who love him lots and see him for what he really is---a sweet baby who just needs more help.
To keep up with his story check out his website at: www.freewebs.com/simonpeters
Please email me at mailto: gertyp44@yahoo.com if you’d like to correspond.
