On January 5, 2012 I went to my 38 week check up with my mid-wife. Up until that day 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 were normal. The ultra-sound came back showing that my amniotic fluid level was fine, but Jameson was measuring somewhere around 35-36 weeks.
Honest to God, 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 measuring 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 excited and nervous, the news that you’re going to meet your baby is always exciting, but things were progressing with such caution and none of us still had no idea why.
At this point I had been in the hospital pretty much all day because I originally just went in for an appointment. Now, my phone had died and I had no way to tell my husband what was going on. The nurse called him, but due to HIPAA could only tell him over the phone that I was being admitted, only causing more chaos to the scenario.
He made it to the hospital in plenty of time though – labor took 33 hours!
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. But my body wasn’t responding. I can’t remember what time, but at some point on January 6th they stopped my Pitocin drip and let my body take a break. A few hours later they started the drip again and a total of a whopping 33 hours later from the start of all this Jameson was born at 8:18am, January 7, 2012 weighing 6lb 2 oz.
The first few moments after Jameson was born were surreal. It was hushed in the room when he was born, and more people starting rushing in.
I had been in the hospital for 2 days already and people were now asking my husband and I if we were expecting a normal birth. – of course we were! What kind of question was this and I still couldn’t understand why people keep asking?! I was confused but I new in my gut something was wrong. The look on everyone’s face, including my husbands was telltale. I watched as a nurse brought another doctor into the room and they whispered in the corner.
All of a sudden it felt like there were a million people in the room and I was just sitting there waiting for my newborn child.
I could hear Jameson crying, so I knew he was breathing. I kept looking at my husband and his face wasn’t revealing anything to me, I think he was in complete shock. 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 deformities”. I heard what she said but I wasn’t really listening. At this point my body was totally numb. I didn’t feel like I was really even there anymore.
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, what was this?
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 (or say) with us.
Jameson was acting like a normal baby, but he obviously has abnormalities, so they were hesitant to let us go home. They didn’t know the extant of what his medical complications might be, but so far he was otherwise acting like a “normal”, healthy baby would. Before we left
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. The emotions I felt were all over the place. A part of me was mourning the baby I thought I was going to have while a part of me was welcoming the baby I did have into my heart and our family. It’s hard to put into words what it was like. There was no doubt I had immense love for this child, but it was very confusing at the same time. Instead of spending the first days of his life celebrating, I spent it worrying. I knew we had a long road ahead of us, but I had no idea what that road was going to look like.
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 kind of out-doctoring his doctors, lol. We couldn’t get anyone to say anything or answer questions. I think they were all too unsure and didn’t want to say something that was untrue or lead us down the wrong path.
We were certain that his coronal cranial sutures were fused, and that the issues with his hands and feet were related. But, the information was limited, and Jameson didn’t fit the complete picture of what we found. We were fairly certain it was syndromic craniosynostosis. Syndromes such as Apert’s, Crouzon’s, Saethre-Chotzen, and Pfeiffer syndrome were the ones he most closely fell under. After enough digging we were pretty sure it was Pfeiffer syndrome. Again, the information was very limited. The wonder and worry set in and I spent countless hours wondering what my new baby’s life was going to hold for him.
The first few weeks were spent scheduling and researching doctors so we could make sure Jameson got all the care he needed.
Needless to say, the beginning of our journey was a shock and life changing adjustment. We weren’t expecting anything like this and it took quite some time for the reality to set in. Underlying throughout all of this though, was that before Jameson was born we loved him, and that love never waivered. He was our baby. Was it scary? You bet. But everyday that passed Jameson showed us his strength and we got to know this sweet boy that we were meant to take care of. Just like with the new addition of any baby it was soon hard to imagine our life and our family without him.