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Real Life

My daughter who has Down Syndrome is perfect

Often a Down Syndrome diagnosis is viewed as negative, but one family has found it was anything but... as told to Danielle Colley.

By Danielle Colley
At my 12-week scan, I was told I had a one in two chance of my baby having Down Syndrome. One in two sounds like 50/50 but it’s actually not. Anything that’s one in 300 or under is considered high chance so one in two is about as conclusive as it can get.
The doctors say “I’m sorry but there is something wrong with your baby” before they break the news of Down Syndrome, so you’re expecting something bad. When I heard those words I felt like my world was ending.
This pregnancy was our third child and my brain had many irrational thoughts in that moment. I thought my husband might leave me, I thought I had done something wrong. I was devastated.
My friend had been watching my kids and they came and met me. I was all teary eyed and upset, and my children asked me what was the matter.
“There’s something wrong with the baby,” I told them. “She has Down Syndrome.”
My kids went to school with a boy who has Down Syndrome and they couldn’t understand why it would be a problem. They loved that kid whom they considered their friend, I also thought he was a great kid and his family were a beautiful family. In that moment I started to see things slightly differently.
I still went to bed for a day and cried, but we decided to have more testing done to see if we could find out more information.
Further testing revealed that our daughter also had hydrops, a condition that occurs in foetuses when they accumulate fluid in their body. Her nucal fold was flooded, she had fluid in her skull and in her chest cavity. They told us she was unlikely to survive. We were watching her white little body moving around on the dark screen and I thought that would be the last time I saw her.
Suddenly, in the face of our baby dying, Down Syndrome wasn’t important anymore. I was so sad and we just waited for the pregnancy to miscarry. But she didn’t. Our 19-week scan showed no sign of hydrops and our baby was going to make it, and I am so incredibly grateful for that little shining light who brings so much joy to our family.
There aren’t degrees of Down Syndrome, you either have it or you don’t, but just as all people are different and unique so are people with Down Syndrome. They have different skill levels and communication levels. The tests only tell you that there is an extra chromosome, and it cannot tell you anything about the kind of life your child will lead however there has never been a better time to have a child with Down Syndrome.
If your child is born with heart issues they can often be fixed early, and early intervention can help with many of the other issues such as speech and development. They go to mainstream schools, and there are work opportunities. Once upon a time children born with Down Syndrome were institutionalised, but now they are valued as just another child in the family with their own special qualities.
When she was inside me Josee was deemed a defect, she was an abnormality, but now I have this amazing little girl who has taught us so much about life. She has peeled away every layer of my beliefs, and attitudes and perceptions are stripped away and rebuilt. She has shown us what life is really like, and that this whole perception of perfection that society craves is ridiculous and unattainable.
© Dana Taylor
We believe our life is perfect and that she is perfect, as are our other two children.
My other kids are growing up as compassionate people because of their sister, they don’t have prejudice and they are very accepting of people. They adore her, and she adores them.
Josee is so smart, at just over three she can read about 150 words, and she can also sign 150 words, and she’s a little behind other kids in gross motor skills but it wouldn’t matter where she sat developmentally, I would still love her to bits.
She loves to play babies and mummies and she enjoys painting and nature. She rides horses and loves riding the quad bike with her dad. Really, she is just like every other kid.
© Dana Taylor
I now hope to create a set of pre-natal guidelines for a "model of care" to be used nationally so all women whose babies have this diagnosis get the same information and prenatal care. If one doctor makes it a negative while another doctor explains that it’s not the end of the world, there is no consistency in care.
I’m not suggesting that we diagnose it with super positivity, but neutrality gives women more room to make up their own minds. Often women are given only a short space of time to make a decision about termination so there is already so much pressure on her. I’m pro-choice but I’m also pro-educated choice.
Maybe without negative messages at the point of diagnosis, more families will be able to see that Down Syndrome can also positively impact a family and make it that little bit more special.
To see more of Josee's journey, you can follow her on Facebook here.
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