“Our Doctor Told Us To Take Him in Right Away” Discovering Our Newborn’s SCID Diagnosis

May 31, 2016

When Colton was just four days old, I got a call from his pediatrician saying he had a high possibility of having SCIDS (Severe Combined Immune Deficiency) and that I needed to take him to the children’s hospital to get the real test.

We took him in two days later and they told us we needed to keep him away from people and I needed to stop breastfeeding until we knew the results. Later that day, we got the news that we were afraid of.

He had SCID and he would need a bone marrow transplant. We scheduled the appointment to consult with the BMT team and got started on the process of trying to find a donor. In the meantime, we did alot of research on SCID and bone marrow transplants and were terrified by the results.

After many tests and broviac placement, at 5 months old exactly, Colton received his cells. He was conditioned with ATG, a rabbit and horse antibody that works like chemo. I cannot find information on the internet to suit Colton specifically as this has only been done in SCID boys 8-9 times. He’s in a study based in California. After about a month and a half his chimerisms were still not coming up as fast as planned and he was stuck with 1 t cell so, he received a small amount of donor t cells to help that number go up.

We got good news about his chimerisms today. He is 7 months old now and still going strong and growing like a weed despite having rhinovirus.

Did you have a similar diagnosis? Tell us your story below.

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