Evewoman: My daughter's battle with down syndrome - The Standard
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2017-06-12 09:20:50 The Standard : Eve Woman 40 58
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My daughter's battle with down syndrome

My daughter's battle with down syndrome

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I went in for a normal delivery and the minute my daughter was handed to me I noticed that her eyes had an upward slant. My husband, mum and cousin were in the room with me and I asked them if they had noticed anything unusual about the baby. They all said that they hadn't noticed anything but I already knew what this was. I barely slept that night. I was on my iPad looking up symptoms of Down syndrome. The next morning, the pediatrician came in and checked the baby. He told me that I had a healthy baby girl and as he turned to walk out, I asked him if I had anything to worry about. That's when he stopped in his tracks and said "I think I know what you are thinking but I can't confirm anything until we do some tests."


Because it was a normal birth, we were soon discharged from the hospital. The doctor had written us a slip to go get blood tests done at Path Care. The blood work was done but unfortunately the tests aren't carried out locally. They are done in either South Africa or Germany and it took us three weeks to get the results. It was such a dark place to be in because my husband and I were grieving the child we expected but didn't get while at the same time trying to handle having a child who had so many complications.
The results eventually came and it was confirmed that yes, Ella had Down syndrome. My first child was about four-years-old at this time and the first thing he would do when he came home from school was hold Ella. He kept singing to her that Bruno Mars song 'Just the way you are' and when I listened to the lyrics, I knew that this was God talking to me through my son Eli. My husband and Eli were such pillars of strength and from that moment on, I stopped looking at all the things Ella didn't have and began seeing her for who she really was. She was such a cute little girl.
She was about three and a half months then and I went full steam ahead, trying to get as much information as I could on her condition. Unfortunately for us, the doctor who had delivered her kept telling us "one day at a time" and that wasn't really helpful. Ideally, before she left the hospital there are certain tests that were supposed to have been done but nobody told us anything about them. We sort a second opinion and the doctor we saw gave us a list of tests that needed to be carried out. Kids with Down syndrome are prone to certain conditions, so her heart, hearing and eyesight needed to be checked. All of Ella's tests came back clean except for her eye test. She is extremely shortsighted and so she started wearing contact lenses at the age of four months. She wore them up until she was two-years-old. Now she wears glasses.
At this time, we also started her on occupational therapy. Children with Down syndrome are born with low muscle tone and they need the therapy to strengthen their muscles. Without therapy what a typical child will be able to do by five months of age, a child with Down syndrome will be doing when they are a year old. I was lucky enough to find a good occupational therapist to work with Ella but for her speech therapy, I learned everything online as there are very few speech therapists in Nairobi. Ella is five now and she is walking, running, jumping on a trampoline and can even read a ten-word sentence. I saw this video on YouTube about this lady with Down syndrome called Heba Al-Sharfa who is a teacher in Gaza and I believe Ella will be a teacher too. She really loves sharing her knowledge.
I have learned everything that I know the hard way and I know of so many mothers out there, especially in the rural areas who don't even know that their children have Down syndrome. That is why I started awareness campaigns and through the annual dinner that we hold every 14th of October, I was able to raise enough money to open My Ella Centre. It's a one-stop shop where parents of kids with Down syndrome can get the help they need to enable their children to close the gap.

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  • My daughter's battle with down syndrome