On January 5, 2012 I went to my 38 week check up with my mid-wife. Up until today I had a completely normal pregnancy. During my visit my mid-wife measured my fundal height, just as she did every visit, and was concerned that I was all of a sudden measuring way too small for 38 weeks. She sent me over to Perinatology to have a quick ultra-sound just to make sure Jameson was okay and my amniotic fluid levels weren’t low. The ultra-sound came back showing that my amniotic fluid level was fine, but Jameson was measuring somewhere around 35-36 weeks. As the doctor described “He’s measuring small, not quite dwarf-like, but very small, and there may be an issue with the transfer of nutrients from the placenta to the baby”. At this point in my head I was telling myself that ultra-sounds, especially third trimester ultra-sounds can be very off. She told me that Jameson was about 6lb 4 oz at this point. Well, my older son was born 6lb 15oz, so that didn’t seem too concerning to me either. But, just to be on the safe side she sent me over to Labor & Delivery to have a Non-Stress Test. Jameson and I were hooked up to monitors and watched for about an hour or so before the doctor came in and told me that Jameson’s heart rate keep dropping dangerously low after my contractions and explained to me that it’s normal for their heart rate to drop during a contraction but should recover after and the opposite was happening with Jameson. He then told me that I was being admitted and was going to have a baby.
I was prepped for a C-Section, but they doctor’s wanted to attempt to slowly induce with pitocin while closely watching Jameson’s heart rate. Labor was induced at 11:00pm on January 5th. Jameson did beautiful and his heart rate never once dropped. 33 hours later Jameson was born at 8:18am, January 7, 2012 weighing 6lb 2 oz.
The next few moments were surreal. I had been in the hospital for 2 days already and people kept asking my husband and I if we were expecting a normal birth – of course we were! What kind of question was this and why did people keep asking?! I watched as a nurse brought another doctor into the room and they whispered in the corner. I could hear Jameson crying, so I knew he was okay. I kept looking at my husband and his face wasn’t revealing anything to me. And then the nurse came over and told me that my baby was fine, but she had to warn me that he had some physical deformations. I heard what she said but I wasn’t really listening. I just nodded – okay, just give me my baby! was all I could think.
As I held my sweet, sweet baby I looked at him. Jameson’s head was misporportioned, so much so that his eyes were bulging out of his head. His thumbs on both of his hands were bent inward toward his body, and his big toes were like this too as well as with some webbing. I just couldn’t understand – did I do this to him, did I break his thumbs during childbirth? His APGAR was a 9; the doctors and nurses immediately said that he didn’t have Down Syndrome – so what was wrong, what happened?
Over the next few days I learned a lot about Jameson and about syndromic craniosyntosis. Because Jameson’s condition is so rare the doctor’s and nurses didn’t really know what to do with us. Jameson was acting like a normal baby, but he obviously has abnormalities, so they were hesitant to let us go home. Jameson had ultra-sounds on his brain, heart, kidney’s and bladder, an EKG, and a 4-point stress test within a few days after he was born. They finally let us go home 3 days after he was born!
My husband and I had spent almost every waking hour researching Jameson’s symptoms trying to figure what it was that he has. We were certain that his coronal cranial sutures were fused, and that the issues with his hands and feet were related. We both think that Jameson has Pfeiffer Syndrome. Pfeiffer Syndrome is a very rare disorder and only 1 in 100,000 children are born with it.