Why It Sucks to Be a Baby Boy With SCID In Your Family Tree

Although I’m no “spring chicken,” I still grapple daily with the reality that innocent babies get sick and die, or that they don’t die, but they languish and suffer; it’s just not fair.

Blame God, blame the universe, it’s awful. But as we all know, life isn’t fair.

Take the story of little Sam Roberts who suffers from severe combined immunodeficiency (SCID).

In case you aren’t familiar with SCID, it’s an inherited disease where baby boys are born without a healthy immune system. So a little cold could potentially be fatal to a child with SCID. Which means these babies must live in isolation, in bubbles.

television seinfeld frustrated facepalm george costanza
Remember the episode of Seinfeld? Well, sadly, “bubble boys” are the reality for these children. Source: www.giphy.com

And only recently have tests become available to help diagnose babies in vitro.

Newborn testing is widely available, but because of a lack of awareness (and I’m guessing a significant expense), many parents are oblivious that their newborn child is sick with SCID—until it’s too late.

Most babies won’t survive long enough to reach their first birthday. We can’t blame doctors, though; they miss the opportunity to make a diagnosis because all too often, SCID babies appear healthy. So without mandatory testing, they have no reason to be alarmed or suspicious. The good news is that treatment is available—even in utero—but it’s not without extreme risk, cost, emotional trauma, and pain to these babies.

Samuel’s amazing parents Pam Roberts and Ian Miller, fortunately knew to have their baby tested in utero because Pam’s brother had the genetic condition, which only affects boys.

After Sam was born, his brave parents took him home where he stayed for six weeks, but as his condition worsened. Little Sam was admitted to the hospital where he underwent treatment in isolation. The only way his parents could be with Sam was in a bubble. He went through a number of procedures, chemotherapy, operations, and finally a bone marrow transplant that helped to save his life. And from what I’ve read, little Samuel is doing well!

Yes, it sucks to have SCID in your family tree, but with the abundance of help and support that some families are now receiving from the Bubble Foundation, Mommies and Daddies have hope that their babies might one day live and thrive! And it’s about time!

Now if ONLY an effective treatment could be found that’s less invasive, that doesn’t involve chemotherapy, that doesn’t involve pain, that’s actually affordable… THAT would be grand! Maybe gene therapy is the answer?!

Alisha Stone

Alisha Stone

Alisha Stone has a BA in psychology and is dedicated to improving the lives of others living with chronic illnesses.

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