Wyatt’s older brother, Jackson, (a mere 2 months older than the muppets) stood at the window to the NICU. “This sucks. This is how I met my sister.” But Wyatt wouldn’t be in the NICU for long (at a full-term 8 pounds he seemed a giant among Lilliputians) because he was quickly being prepared for a move to isolation.
No one was sure what was wrong with him.
Two years earlier, Jackson stood at the same window to meet his sister, Tyler. Tyler Grace was born with Strep B. But because her mother tested negative, Tyler ended up with sepsis. Jackson met his new sibling as she was quite literally encased in a bubble.
But as terrifying as Strep and sepsis is in a newborn there was one major striking contrast between sister and brother NICU fighters: the medical staff was readily familiar with the signs, symptoms and ultimate solution for Tyler’s ailment.
With Wyatt, there was fear and uncertainty. Did he have an infectious disease? What would the diagnosis be? How long would he be in quarantine? What was the new normal about to become?
Those questions may sound all too familiar to those who have survived the preemie battles. Yet, as much as a premature beginning sucks, with 1 in 9 little ones born too soon – it’s not a rare beginning.
Wyatt and his family were thrown into a cesspit of uncertainty amid the raging hormones of birth. You see, Wyatt has a rare disease.
You have absolutely no idea what I just said, do you? That was my reaction when I heard about my friend’s newborn. “Huh?”
Mastocytosis is a disorder characterized by mast cell proliferation and accumulation within various organs, most commonly the skin. The most common symptom of CM is skin lesions – bumps and spots, which can painfully blister.
Again, “Huh?” (And more importantly, what does that mean for the little one.)
Mast cells are produced in the bone marrow to serve as part of the body’s immune system army. They’re stationed in areas prone to potential infections such as the skin. When an allergen alert is triggered, mast cells leap into action releasing histomines.
Histamine increases the absorbency of white blood cells into small capillaries in order to engage enemy pathogens. Most of us are likely familiar with this particular affliction as experienced during spring when our world is dusted with large swaths of pollen. And that sucks.
The biggest danger for children with mastocytosis is the threat of anaphylaxis. The abnormally high number of mast cells enhances the potential for overeager rogue agents to release too much histamine into the blood.
Because who doesn’t relish the thought of going all Pulp Fiction on an infant and having to stab a writhing child, gasping for air, with an EpiPen – all because someone in the near vicinity thought it would be a good idea to marinate in their cologne that particular morning.
Didn’t think so.
Mastocytosis is a rare condition – occurring in less than 1 out of every 1 million. Cutaneous mastocytosis is more common than systemic mastocytosis, but it’s still rare in general terms. Diffuse cutaneous maculopapulous mastocytosis accounts for around 1-2% of all cases of CM and almost exclusively presents during infancy, mainly in the neonatal period.
Less than 30 cases of neonatal onset DCM have been described in the literature so far. (Orphanet)
Feb. 28 was Rare Disease Day 2015. The day is designated to raise awareness among the public about (shockingly) rare diseases, but also the stressful impact on the lives of those impacted.
Alas, Wyatt rocks his spots every day of every year. So I thought I’d keep the conversation going all the way into March.
3 Responses to Wyatt the Warrior and His Spots
Thank you for writing a post about a rare disease and thank you for pointing out that Feb 28 is Rare Disease Day.So few people are aware and make an effort to spread awareness. We(the medical community and families with members with rare diseases) always have a parade with posters, flyers and signs in our town town on Feb 28 and it’s great when people read the flyers and ask for details. Awareness really is the first step towards convincing people to help out with research or simply to be more tolerant and empathetic to people who appear to be different(appear being the key word). Also thanks for introducing me to Wyatt, he is a lovely boy.
Awareness is huge. I’m happy to call attention to it – especially for Wyatt, he’s such a gentle little soul (further impressive if you knew the energy levels/whirlwind enhanced by his older siblings) 🙂
I am so grateful. I am appreciative of what an amazing friend you are. Thank you for taking the time to profile Wyatt and spread awareness about his disease. The life journey with Wyatt has been wonderful and challenging and I am so blessed by each of Wyatt’s Warriors. Everyone who has supported Wyatt has touched our family and other patients with mastocytosis. Love to you Tricia. You are amazing.