(Read the previous blog post to this continuation)
(Read Adrick's Story)
Days after finding out about the clubfoot I was still in denial. It was hard to swallow, and I was confused. I did everything. I took all my prenatal vitamins, didn't miss one. I ate all the right foods, took nothing for my morning sickness and even had stitches in my thumb without freezing all to avoid everything and anything I could. Still, something had "happened." A lot of "why me" and "why him" floating around my head.
I had another follow up to the hospital because of my high-risk factor and the new Royal Victoria Hospital in Montreal was not kind to its' pregnant patients. On average, I waited between 4-6 hours after my appointment time to see my doctor. While sitting there one of the genetic counselors cornered me, she talked openly in front of a whole waiting room of expecting moms about my son's condition. While she tried to be discrete, I felt like everyone heard and now knew if she was talking to me there had to be something wrong with my child. Everyone was starring - or so I thought.
The genetic counselor ended her conversation while walking away and yelling, " I will have Shriner's call you and my partner to set up a full genetic counseling appointment." I was mortified.
--- Fast forward to the genetic counseling appointment a few days later ---
My husband and I were greeted in the waiting room by a young lady who takes us back to a regular exam room. She sits us down, and me being 36 weeks pregnant, in the middle of a cross-country move and new house renovations, none of my family around, an almost-2-year-old at home plus the hormones and the hottest summer in the last 50 years in Montreal I was at my limit.
She begins by asking if there our family history. Where were we born, our parents, our grandparents, and great-grandparents. Is there a history on either side of birth deformities? Is there any hand or foot deformities or cleft palate in the family? Is there a history of dwarfism? Is there a history of spinal or leg issues? Nothing. Then she asks if there is a history of down syndrome. My heart drops at this one, but still nothing. There was something different in her tone of voice about this question. She goes on to explain that she is pretty sure, looking at my charts that my little boy has down syndrome.
I can barely speak. I start bawling and ask her to explain why she thinks that he has down syndrome. She goes on to explain that the combination of me carrying twice the amount of fluid (I. am. huge.), two placentas, he is a LARGE baby and the clubfoot means there is a high likelihood he has down syndrome. I went on to tell her through my tears it was impossible. I had had a Harmony Test at ten weeks through a study at University of BC which tests trisomies 21 (Down syndrome), 18, and 13 that delivers accurate results from as early as ten weeks of pregnancy and the chances were 1 in 10,000. She went on to explain she didn't know anything about the test and that he was almost guaranteed to have Down's Syndrome.
I had cared for some children with Down Syndrome and other handicapped adults through RESPA care with an ex-boyfriend when I was young, and I knew the road wasn't going to be an easy one for my little boy.
I was swallowing razors.
She continued in her counseling session to offer me an amino at 36 weeks to confirm her suspicions. She was nice enough to offer a rush on the amino if I wanted it. My husband and I decided at that point there was no point to an amino. I was 36 weeks along, and it would likely send me into early labor, either way, Down Syndrome or not we were keeping this little boy. We rolled our dice and let them lay where they landed. We were going to wait this one out.
We get in the car and I am so sad, scared and mad. Mad at the world. Sad at all the things the little boy won't get to do and worried about all the nasty people in life he would meet.
Fast forward the to the day my son is born. I had a long 24-hour labor which ended in them giving me an epidural and breaking my water (after many refusals) as I entered the push phase of labor, being that we were in a teaching hospital there were anywhere between 20-25 people in the room. They had called a team of special Peds doctors and nurses to come and assess the baby once he arrived and there were some student doctors ("my" doctor was somewhere in there too) all waiting for this child to arrive.
Once he was out, and they delayed the cord clamping for a couple of minutes, he was whisked over to the Peds team and assessed. It seemed like an eternity that they had him, eventually bringing him over and handing him to me. They didn't say anything, they just left. We were unsure what that meant but didn't care either. We wanted to enjoy our little boy.
The day after delivery, I was alone in the room with my son. A doctor came and knocked on the door. He has a school of what looked to me to be teenagers with him dressed as doctors. He asked if he could show the student my son's clubfeet. I was totally caught off guard and could see the students peering in and waiting. I thought to myself if they can't learn how we will new doctors know how to care for his condition in the future. I immediately let them in where the doctor showed the group of students Adrick's feet. He explained that his feet were congenital and not positional and how to check. It was also new information to me.