Oddly enough, it’s when we are in the Cancer Hospital that we receive the most interesting comments. Today in the crowded elevator, a lady looked at #LukaTheLion and said rather seriously, “You’re too young to be wearing a mask.” He just kept staring.
Now, I know that anyone who is in a Cancer Hospital elevator must be there for a reason – it’s not exactly a place you stumble upon. Whether a patient, family member, or hospital staff, we’re all connected in a way. I’m sure she was just thinking out loud that this toddler must be sick in some way and how he’s seemingly handling it well. Maybe she’s trying to remind herself that even kids are touched by disease, and not just her. I try to lead with grace and courtesy when people say what they say towards our lion, especially in the Cancer Hospital elevator.
But, the reality is that there is not an age or size of human that is too small for a mask. The woman’s comment made me think of all the babies – our lion included – who have endured a lot more than wearing a mask in public. September marks Newborn Screening Awareness Month. It’s the quintessential way we know that tiny humans may have a congenital condition or disease. With just a few drops of blood, the newborn screen – in many cases – can quickly point medical providers to treatments for conditions that otherwise would be life threatening.
A lot of people, especially in the medical field, ask when our lion presented with his rare immunodeficiencies. The truth is we knew something at a very early ultrasound, but it wasn’t clearly understood at the time. So, we waited. He was born, and was considered OK, but always matched with, “as far as we know.” So, we waited. He had a newborn screen, and it came back normal. So, we waited. As two weeks passed, he slept nonstop. He didn’t gain weight despite numerous interventions. He suffered from a severe cellulitis rash that nearly needed surgery to drain. He had a simple blood test that showed he lacked a basic component to fight infection in his blood. The list of more symptoms and tests goes on and on over the first year of life. And, yet we still wait for an overall diagnosis. But, are overwhelmingly thankful that our lion’s medical team, led by Dr. Philip, looked toward treatment through a bone marrow transplant since our lion’s disease – whatever it is exactly – wasn’t compatible with life.
I explain all of this to share that there is a disease that is considered near whatever it is that our lion has, and it’s just recently getting traction in the newborn screening movement. It’s SCID (severe combined immunodeficiency disease), and sometimes (sadly) called “the bubble boy disease.” There’s an even more recent form of this disease that is fondly called, “Leaky SCID” which is like a cousin of the original SCID. We all joke with Dr. Philip that our lion has “Luki SCID.” And, that’s probably not that far off from reality. Our lion doesn’t fit into any diagnosis box or code right now, but as science and research learns more – particularly in a lab in Cincinnati Children’s – the definition for SCID will probably evolve and may be articulated to include the genetic and clinical components of our lion’s disease.
In a way, even though I knew deep down something wasn’t right from the beginning — I oddly cherish those first couple of weeks before we officially knew something wasn’t right. As if we don’t know, it isn’t happening. But, that’s not true. Whatever it is, our lion was born with it and his first year would have been much better for all of us if we knew not only the overall diagnosis, but knew it at his newborn screen. Someday, just as science has evolved tremendously in just the last 3-10 years in this area, my hope is that someday if another tiny baby is born, a newborn screen can tell us that he or she has “Luki SCID” – or whatever it will be called – and the medical team, insurance, disability office, family, and baby can all move together towards a bone marrow transplant. Since, you can indeed be even smaller and wear a mask. At least you should be thanks to a newborn screen.
Dedicated to our #LukaTheLion and all the tiny babies fighting every day. We’re in clinic all day for the 5 hour infusion for EBV and then a blood transfusion. It’s a full time job to fight. Naps needed.
