Brook Morrison from The Daytrippers Team describes the moment she began to understand what it might be like to have a disabled child.
Sometimes life throws you a curve ball and after two miscarriages in two years, I started to worry. The thought of never having a child was devastating to me and I desperately began to research every possible wives tale, fertility issue and evidence-based study that might help. Eventually I went to visit a specialist who diagnosed me with mild polycystic ovarian syndrome. My spare time was spent researching stories and evidence meant to increase fertility; I began to drink whole milk, eat eggs, stopped drinking alcohol, restricted caffeine and followed strict guidelines.
In March 2010 a pregnancy test was positive. Who knows if the diet changes worked but I felt differently about this pregnancy and called my Mom immediately. She answered the phone with morning in her voice as it was early for her (we are five hours apart as she lives in Florida and I live in England) and I blurted out “hi grandma.” For a minute I didn’t know whether the line had dropped. Then I heard her speak through tears and she said “really?” I never shared the news of the previous miscarriages with her before but we had a long discussion about it and I’ll never forget how special that moment was between my Mom and I. That evening I told my other half when he got home (my Mom and I discussed video taping his reaction – I did not do that). But his reaction? The repeated word “wow!”
To say I was thrilled to be pregnant but hated how it made my body react is an understatement. Among the usual constant nausea and exhaustion, I vomited every day on a complete whim without notice (on the Gatwick Express train, while riding a crowded bus in my scarf on the way to Luton airport, while walking to the store … the list is endless). At week 12 of pregnancy we went for the first ultrasound scan. The technician slathered goo on my belly and a blob appeared on the screen. There before my eyes was a little creature like thing moving from one way to the next and back and forth. It was absolutely incredible! Was this really happening in my stomach?! The Ultrasound technician started to snap a few prints for us to take home and then she stopped, focusing on the head. Immediately, I said, “he has a very thick nuchal fold” (this is a marker for chromosome abnormalities detected by fluid retention behind the neck) and my heart completely, in one loud THUD, sank as low as it could. I remember Dad-to-be telling me not to be so negative but the technician confirmed that it was indeed very thick; she left the room, came back and gave me a 1 in 10 chance of having a child with down’s syndrome. The average risk for someone my age was 1 in 1000. We were told to see a specialist at week 14 to see if the nuchal fold had decreased in size and to make a decision about whether to have a CVS (Chorionic villus sampling – a prenatal test that detects chromosomal abnormalities in the fetus).
The decision was not easy, especially as there was a tiny risk of losing the pregnancy, but decided it would be best to have the CVS in order to prepare ourselves emotionally and mentally for the future. This was also the moment I told friends and family who were overwhelmingly understanding and supportive. A friend of mine was getting married in Austin, Texas and I had to tell her we would not be there and why.
The staff at the London clinic were positive, the walls were bright, the office was filled with future parents or women about to undergo procedures. I was freaked out. We waited in a small room on our own until they called my name, scanned my belly once again and then went into the room to have the CVS. The doctor came in chatting a mile a minute, the nurse was smiling and I felt like it was The Twilight Zone. The doctor kept talking to me, put a numbing agent on my stomach and said he would talk to me during the whole experience. OOF! The needle poked through and it felt like being punched in the stomach but it was over in a matter of seconds.
48 hours later I had not miscarried. Hooray! But what was most difficult? Waiting up to 10 days for the results. The clinic explained that the test could pick up other chromosomal abnormalities, heart defects – a myriad of complications. So naturally I did exactly what you should not do and researched all sorts of disabilities and experiences of families with disabled children. I could not get enough. I read heartbreaking, happy and tragic stories about families, carers, women and children; what helped them cope, what broke them down, how they processed the knowledge that their child would have a disability, etc. Some people made the decision to terminate and others found out too late and/or continued with the pregnancy. All of them made a life changing and sometimes agonizing decision based on what was right for their personal circumstance. Surprisingly, reading these stories made me feel better. There were SO many of them. I was not alone, it was a whole new world I never knew existed.
One week after the CVS I walked into the house and was handed a mobile. “Press 4 to hear the message” he said. Heart pounding I took the phone. It was a polite woman on the other line and I was so numb I did not even listen properly but asked the future father “was the test positive for DS?”
…Queue floods of tears.
Perhaps you read the story about Melanie Preston? While waiting for the CVS results during my pregnancy she was in nursing school and she kept reassuring me that all would be fine; she thought I was having a boy because boys were more likely to have thick nuchal folds than girls. I thought she was just trying to ease my stress. But you know what? Somehow she was right. I gave birth to a boy on 10th December, 2010. He is THE most wonderful human in the history of mankind. 🙂 And you know what else? Melanie went on to have her own son with a thick nuchal fold. His name is Elliott. The beauty of it all is that; thick nuchal fold or not, any child has the ability to bring joy. Sure, some children are born with a disability, but they are not fully defined by their disability.
Since this experience during my pregnancy, my heart swells when I see a child with down’s syndrome. I want to go up to them and hug them. Thick nuchal folds of the world UNITE!
Stay connected to Brook Morrison: @ebrookm