Approximately one in 800 babies in Canada is born with Down Syndrome.
According to the Canadian Down Syndrome Society it is “a naturally occurring chromosomal arrangement that has always been a part of the human condition.”
An estimated 45,000 Canadians have Down Syndrome, including Alberta couple Nathan and Mindy Felgate’s twin boys. To mark World Down Syndrome Day, Global News asked Mindy Felgate about her experience.
Laurel Gregory: What was your reaction when the doctor first told you?
Mindy Felgate: When we found out that the boys could possibly have Down Syndrome I was going in for a nuchal translucency test. Nowhere in my mind was a thought that the test may come back with a chance of having a baby (let alone two) with Down Syndrome.
Things went quite differently than we anticipated. Once the tech completed the scan, I could sense something was wrong. So we waited, what felt like forever, for the doctor to come in. When she told us the results and what they found on the ultrasound, my first thought was disbelief.
How could all this be happening, and what exactly did it mean?
It was as if she was speaking another language and I couldn’t understand. Initially it was only thought that Baby A (Isaac) had Down syndrome. He had markers such as absent nasal bone, thick nuchal-fold at the back of the neck, shorter arm and thigh bones.
We were given the option to do an amniocentesis (the boys presented as fraternal- separate placenta and amniotic sac) on Baby B. There were so many risks involved that we decided against it. We knew we could handle one child with special needs. It was scary but we knew it would be alright.
Two weeks later, we had another appointment for an ultrasound. This is when our lives were really turned upside down. Life as we knew it really changed.
I was beginning to get used to the nearly two-hour-long ultrasounds, but that day it was much longer. Again my instincts kicked in and I sensed something wasn’t right. My husband and my mom were with me that day, thankfully, because it was probably one of the scariest days of my life.
After the tech was done, we again waited the agonizing wait for the doctor to come in and let us know the results.
This time it was Baby A (Eli). He had developed hydrops, which is fluid in different areas of the body. His was on his heart, lungs and belly. They also suspected that he would also have Down Syndrome.
The prognosis for Eli was grim and we were told he probably wouldn’t make it through the pregnancy. I remember everything, but it feels even to this day like it was a dream.
We were again given the option for amniocentesis to find out for sure the boys did in fact have Down Syndrome. We sat down with the doctor and went through all of the possible scenarios and we decided to do the amnios. I had to get two.
I was never scared about having giant needles placed into my belly, I was worried about losing the babies inside me. Regardless if they had an extra chromosome or not!
We would find out the results in about a week. My husband and I drove home from that appointment so silent. We were scared – scared what it meant for our family, scared for Baby A (Eli) and what was going to happen. I think we were most worried about what it meant for our oldest son. How was it going to affect him? His life would also drastically change.
About a week later, we got the call: both boys would be born with Down Syndrome.
LG: How has your opinion changed?
MF: Neither my husband or I grew up around people with Down Syndrome or with disabilities. This was a whole new world for us. So our opinions and ideas of what this meant has drastically changed.
We were uncomfortable and awkward around those who were different. Unsure of how to act and speak to someone with a disability. We were naive and uneducated. All that has changed.
There are so many misconceptions about Down Syndrome. One I was guilty of is only thinking older women can have babies with Down Syndrome. I was 31 when I had the boys. The likelihood of having a baby with Down Syndrome increases with age, but more babies are born with the condition to mothers under 35, simply because more babies are born to that group of women. Another is that people with Down Syndrome are always happy. People with Down Syndrome have a full range of emotion just like you or I.
LG: What do you want people to know about parenting children with Down Syndrome?
MF: Raising a child (or two) with Down Syndrome is wonderful and amazing because having children is wonderful and amazing. It makes you realize that a mother’s love is not based on a child’s ability, but on your own ability to accept and give.
Having a child with special needs can sometimes be hard, but most often it’s not. And after you realize this, then you realize this is true for all children. You realize that children with special needs are not people that walk around suffering from an illness, but people that learn and do things differently.
Not a single day goes by that the joy of Eli and Isaac doesn’t overwhelm our home. I thank the heavens everyday for these two and their diagnosis. So while this is something our family celebrates daily, we love that the rest of the world has the chance to celebrate World Down Syndrome Day March 21.
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