Friday, October 3, 2014

Down Syndrome Awareness Month - Health Issues

October is Down Syndrome awareness month. Since Gess visited her cardiologist last week I figured I would start by mentioning the health issues that people with Down syndrome often face.

When Gess was born she hospitalized at birth for 5 1/2 weeks due to a heart defect and feeding issues.We had planned to have our baby and come home. That was not to be!

We finally got to come home for awhile. They wanted her to gain weight and grow for the heart surgery. During this time we had home health come 3 times a week to monitor her growth and heart.

She didn't thrive very well so we went ahead with heart surgery in January when she was 2 1/2 months old. We didn't take photos back then. We didn't even have a cell phone, let alone one with a camera. However, the Kansas City Star took photos of the actual surgery!  That is a bit graphic though so I won't share, but you can read the article on one my past blogs about Gesserine's Heart Surgery. Here we are consulting with the surgeon a couple of days before the surgery took place.

The surgery was indeed successful and just last week she had a follow up with her main cardiologist who said everything is going great! We don't have see him again for another 2 years.

I think that is the thing I was least aware of when Gess was born. I equated Down syndrome to intellectual delays, but not health issues. In fact there are many medical conditions that are common among people who have Down syndrome. Gesserine had to be fed by a tube the first year of her life, has had tubes in her ears, and her tonsils and adenoids taken out. She tends to get sick more often and has been hospitalized for pneumonia too.

According to the National Down Syndrome Society "People with Down syndrome have an increased risk for certain medical conditions such as congenital heart defects, respiratory and hearing problems, Alzheimer's disease, childhood leukemia, and thyroid conditions."

As the NDSS goes on to say, "many of these conditions are now treatable, so most people with Down syndrome lead healthy lives." That is the case with Gess. With treatment she is leading a pretty normal life. Without her surgeries she would not be functioning to her full capacity. However these are stressful and scary moments for any family.

The intellectual delays were no big deal to me. I spent my time crying and worrying because my daughter's heart was literally broken! The first few years of her life were filled with doctor appointments, usually with specialists which meant long drives because we live in a very small rural town. My world and life began to revolve around my daughter and her needs.

However, by the time she underwent surgery I was at peace. First of all the more I learned about Down syndrome the more comfort I felt. Lack of good, factual, and positive information made the finding harder on me. I think hospitals do a better job today, but when Gess was born they had nothing for me! After scouring they finally found a book that was 15 years old. It was sad.

Then I learned to lean on and trust the God I claimed to love and know. It is an easy thing to say we love and trust God. It is another thing to live it out. The first time I ever read the entire bible through in a year was that first year of my daughter's life.When Gess entered surgery I began reading my bible. I got 15 chapters of Matthew in that day. I kept on reading it throughout the year and the Lord spoke to me through that. He comforted me, encouraged me, and got me through this time. It is an amazing thing to feel the peace of God through such a trying moment!

So here we are. 13 years later and Gess is a fairly healthy girl. Now our concern is that she may have stopped growing. The big question is - is that due to the fact that she has Down syndrome and has just stopped growing, or is there an underlying cause? We are awaiting x-rays to see and will follow up with an endocrinologist just to be sure.

In the mean time, health issues aside, Gess is enjoying life to the full!

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