DAILY LIVING & MOBILITY

Downright Amazing

Learning Disability

Kristen & Carter

Part 1

Our story starts off a little traumatic, but I promise it gets better. My pregnancy with Carter was a piece of cake. No complications, no problems, no concerns. My biggest worry was if I would get an epidural during labor or not. After a completely normal delivery, Carter entered the world September 15th, at 4:05 am 2.5 weeks early. Everything seemed pretty standard. His vitals (oxygen) were a little low but there wasn't much worry at this point. His pediatrician came and took Carter to do the newborn assessment. After about an hour he came back in the room alone. He sat down and said he had some concerns. 1st, Carter was struggling to keep his oxygen levels up so they wanted to keep him on oxygen. 2nd, they heard a murmur in his heart. 3rd, they were concerned he may have fluid in his lungs. He then went on to talk about how his blood pressure was different on the top and bottom of his body. He literally breezed through all of these topics in about 5 minutes flat and then said, "we have some concerns he may have Down Syndrome. Were you tested?"

Part 2

Knowing nothing about DS I was so confused. I was 29, had no family history, no weird ultrasounds. I can only imagine the look I had on my face. This was not in my "plan". The doctor proceeded to tell us Carter had to be flown to a local children's hospital to be seen by specialists. And oh ya, they were taking him in 10 minutes. I had to stay at the hospital for the mandatory 24 hours. After finally being released we went to see Carter. Upon arrival, we met with a geneticist. She was confused and said that she couldn't tell for sure, but he definitely had some characteristics of DS and a blood test would confirm either way. While in the nicu we continued to be hit with more bad news, jaundice, pulmonary hypertension, a valve in his heart wasn't all the way closed, Hirschsprung disease which required immediate surgery, a feeding tube had to be administered due to aspirations, possible pneumonia. The list seriously went on. At one point I started to wonder if he was deaf and blind. To add to the stress, every nurse and doctor commented on his possible diagnosis of DS. The majority said no, they definitely didn't see it. After 48 hours in the NICU we received a call that the geneticists wanted to meet with us.

Part 3

It's never a good sign when you're called into a family counseling room. My husband and I walked in, and it felt like we were in trouble with the principal. There were a few geneticists waiting for us. We sat down, and one of the men said, "we received the results. Your son has Trisomy 21. How do you feel about that?" Again, I am sure my face was priceless. Who asks how we feel so cold heartedly?! As soon as I heard the news all I could do was cry and say, "I don't want kids to be mean to him". The truth is, I don't care that he has Down syndrome. I don't look at Carter and feel bad for him or feel bad for myself. He is my son, end of story.  Is it different than how I thought life would go? Yes. If I could change things would I? No. You take one look at that sweet baby and your heart melts. He is going to hit milestones. He is going to have a great life. He is a rockstar. A Down syndrome diagnosis is not the end of the world, and that is exactly why I created this account.

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