Isaac’s Story
On April 14, 2019, we had our son Isaac. He was 8 lbs and 15 oz, and we thought we had a perfectly healthy baby. But four days later, we found out differently.
A lady by the name of Jody from the Community Health Clinic came out to our house explaining the news on how they had gotten notification from the Newborn Screening Lab that Isaac’s newborn screen indicated he may have SCID.
So that same day, we went to the CHC to have some more testing done and two days later, his diagnosis was confirmed. We were placed in strict isolation. At 8 days old, Isaac started with a rash on his tummy. We were sent to Riley Children’s Hospital thinking it could be an infection. It turned out the rash was an infection, but it was easily treated. Four days later, we were sent home and placed into strict isolation again.
When Isaac was 2 and a half months old, we took him down to Riley to start his transplant journey. First, he had surgery to place 2 central lines in his chest. There was lots of blood work and testing done. He had chemo-therapy and by the time he was 3 months old, he had his bone marrow transplant from an unrelated donor, followed by three more doses of chemo.
After nine weeks and one day down in Indianapolis, we got to go home. Isaac did get sick from his chemo therapy but hasn’t gotten sick since. Through everything he was a tough little guy. He is now 1 year and 4.5 months old, and he is a happy and healthy little sunshine.
We have been very thankful that Newborn Screening now also tests for SCID that way he was diagnosed before he became ill.