Jamie Middlecamp: The Blessings Of A Down Syndrome Child

Jamie shares the 5 lessons she learned having a son with Down Syndrome. She also explains how God helped and gives IEP advice. Jamie’s BioWife and mother of three–her oldest has Down Syndrome Meme to her two treasures Lived most of her live in North West Arkansas Also lived in a small town in North Carolina Worked with children doing home therapy and as an autism specialist Teaches Pre-K at a Mother’s Day Out Loves serving in her church Loves watching her kids to the things they love: baseball, soccer and Special Olympics Loves the beach and has been swimming with dolphins and 4-wheeling Jamie’s StoryAt the age of 18 Jamie found herself expecting. She married the father of her unborn baby and took very good care of herself during her pregnancy–just like overly cautious first-time mamas do. She had several ultrasounds throughout her pregnancy, and they were all normal. She gave birth to her first baby, an 8 pound 8 ounce boy who they named Tyler in February 1990. A couple of hours after he was born the medical staff took him back for routine tests. After about 4 hours they finally asked the nurse where their baby was and she told them that their pediatrician would be in soon to talk to them. At this point their minds just started going a thousand miles per hour wondering what could be wrong. Tyler’s DiagnosisWhen their pediatrician came in he told them that they had detected a heart defect in their son. So, they were going to run some more tests on him and have him go down to Arkansas Children’s Hospital. Four hours later, their pediatrician returned, this time with their baby and confirmed that he did have heart problems which included several holes in his heart. He also was missing a valve that was connecting his chambers. The doctor also told them that this particular heart defect is associated with Down Syndrome, and that they suspected that he had Downs but they couldn’t confirm it yet. Jamie confesses that as they told her all of this information, she was more concerned about the heart defect. She had been blessed to grow up with some friends who had a baby with Down Syndrome so that wasn’t as scary to her. She felt shocked and scared, of course and they started praying. Their doctors were very shocked that she had a Down Syndrome baby at age 18–that is usually something that happens to 40-year-old women. So there was also some mom guilt associated with her son having Downs–even though she knew she couldn’t have changed anything genetically, she still felt guilty like maybe there was something she could have done to help Tyler be different. So, they sent them home with their baby with specific instructions to immediately return to the hospital if his lips started turning blue. Of course this made them scared to even sleep at night. Arkansas Children’s HospitalThey were also supposed to go to Arkansas Children’s Hospital in three days. Once they arrived they found out that Tyler’s jaundice was bad enough that they had to put him under the lights for a week before they could even look at his heart problem or do genetic testing for Downs. This turned their one day trip into a three week stay! They finally got the genetic testing back and the doctor confirmed that Tyler did indeed have Down Syndrome. This doctor also told them that their son would never read his name, ride a bike, go to public schools; the list went on. This made Jamie mad and she decided this doctor couldn’t tell her that her child was NOT going to do something. They may have swallowed half the pill when he was born knowing that he had heart problems, but the diagnosis was like getting punched in the stomach again. At 8 weeks, Tyler had major heart surgery and the doctors repaired his heart. This was a time of seeing how blessed they were even in their scary moments. Lessons LearnedLesson #1 Count Your BlessingsWhile they were at the hospital they met another little girl with Down Syndrome who was three and she was on her 17th surgery