Being a Parent of a Child with Down Syndrome

Being a parent of a child with Down syndrome

As I was laying in the hospital, the Doctor tells me my baby boy has Down syndrome. I’m at a loss for what I will be able to do to take care of this child, who will have many difficulties in his life. The Doctor kept telling me it will be ok and I will do just fine with raising him. He sent me to see several specialists to getting a better idea of what I can look forward to and how to handle each difficulty he will face. I was overwhelmed, scared and still unsure of how I was going to take care of this new life giving to me. I couldn’t help feeling that I did something wrong during pregnancy.

        I got him in early education at two weeks old and the program was so helpful for not only him but for me and his dad. We learned so much about children with Down syndrome and how they can eventually live a good and fairly normal life when they enter into adulthood. His speech and gross motor skills were and still are delayed. His ability to comprehend is shifted to how well he learns compared to how other children learn. He has and will continue to see several different types of teachers and therapists to help him be able to do more things like the kids his age. We work on his speech so that he can speak more clearly and be able to carry on a conversation. We work on his occupational skills (gross motor skills) to be able to properly use his hands and fingers to cut, write, color, and eat.

        He spent his first week in the newborn intensive care unit with jaundice and his new little body couldn’t process oxygen quite right. He had chronic pneumonia for the first three years of his life. He had his first surgery at eleven months old to fix a clogged tear duct and to have tubes put in his ears. His ears constantly had fluid buildup with a total of 4 surgeries replacing tubes. At the age of three years old he had the most terrifying surgery yet on his heart to repair a hole. Over the last few years now he has had a few more surgeries. His adenoids had to get removed and with that surgery, we almost lost him. We found out that he is non responsive to atropine and needs to have epinephrine to have his heart rate come back up. His tonsils were three times the size of a normal child, causing sleep apnea, so we had them removed just a little over a year ago.