Down Syndrome Awareness: Eden
Join us in October for Down Syndrome Awareness Month as families from our DSDN Birth support group share,
what they wish others knew about their child with Down syndrome.
Our daughter Eden is a pure joy! She has overcome so much in her short lifetime so far. If there is one thing I wish people could know about her, it’s how incredibly strong she is!
When I say strong, I mean physically and spiritually. Eden possess a strength and determination like none of our other children, it can often be described as stubbornness! But I believe God created her and other children with Down syndrome this way because they have to overcome so much.
Just the simple fact that Eden, a child with Down syndrome, was born at full term is a miracle. According to Fetal Loss in Down Syndrome Pregnancies (1), 43% of pregnancies end in a miscarriage or still birth.
Before she made it out of the womb she was fighting to overcome a breech birth, PPHN, temperature regulation, low oxygen saturations, multiple heart defects, intestinal blockage, and on and on. She has so many diagnosis in her chart, I can’t even remember them all.
Eden had her first surgery at two days old! She had another surgery at 1 month of age, countless procedures and open heart surgery at 9 months of age. The CDC (2) states that 5% of children born with Down syndrome die before one year of age. This has been evident in our support group and our hearts break for those families that have lost their child.
When you hear or see people mention “The Lucky Few” it’s referring to the families that are lucky enough to be blessed with the gift of a child with Down syndrome. When you learn and see the statistics, as parents we realize how truly lucky we really are!
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2 “Data and Statistic on Down syndrome.” Center for Disease Control and Prevention, 23 Oct. 2020, https://www.cdc.gov/ncbddd/birthdefects/downsyndrome/data.html. Accessed 25 Oct. 2021
Religion that God our Father accepts as pure and faultless is this: to look after orphans and widows in their distress and to keep oneself from being polluted by the world. – James 1:27 NIV