He was so handsome and so big! He was a little tank,” Shannon says, recalling the joy she felt the first time she and her husband Steven held their youngest son just one year ago. “I immediately knew his name was Wyatt James.”
But then, she noticed the odd bumps and blisters covering Wyatt’s body from head to toe.
“You can hold him for just a minute,” a nurse told them. “But we need to take him to the Neonatal Intensive Care Unit.”
What should have been one of their family’s happiest moments quickly turned somber as they feared the seriousness of Wyatt’s condition. The dermatology team suspected it could be a skin disease, but they couldn’t know for sure.
Wyatt needed to be transferred to Lucile Packard Children’s Hospital Stanford.
“I wanted to cry as I thought about the fact that his first drive was in an ambulance to another hospital, instead of home with us,” Shannon says. “As a mom, we always do whatever we have to do in order to take care of our littles. I didn’t care that I had just given birth and was still healing—so long as I could be with my sweet Wyatt.”
A special transport team came to bring baby Wyatt to our hospital and our specialists quickly got to work. The next few days were excruciatingly slow as baby Wyatt endured countless tests to rule out different diseases.
Finally, after six days of poking and prodding, the diagnosis came: diffuse cutaneous mastocytosis, a disease of the white blood cells. Wyatt is one of just 30 infant cases to have ever been reported in the United States. He is at risk of going into anaphylactic shock at any time, and doctors are unsure of the effects an EpiPen (the last line of defense) would have on an infant. The good news: the disease is somewhat manageable with daily medication, modified lifestyle (limited exercise, heat, cold, sunlight), and frequent check-ups.
“I feel incredibly blessed to live in the Bay Area and have access to this world-class hospital,” Shannon says, holding back tears. “They have the expertise that other hospitals don’t. If it wasn’t for Lucile Packard Children’s Hospital we may still not know what was wrong with Wyatt and how to treat him.”
Today, little Wyatt (who just celebrated his first birthday at our hospital) is a perfectly happy boy—he loves to eat avocados, dance to country music, and play with his big brother and big sister. Almost daily they’ll meet a stranger concerned that Wyatt has chicken pox or that he’s contagious (he’s not), and the family takes these opportunities to raise awareness of Wyatt’s disease, share his story, and work toward a cure.
“I LOVE this hospital for a lot of reasons. His doctors are the best,” Shannon writes on her social media page. “They care and each patient truly matters.”
Authors
- Ali Kagawa
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- Angie Lucia
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Our 4 month old grandson has been breastfed exclusively. His mom, our daughter, needs to treat a UTI with antibiotics and will need to stop breastfeeding for a while. Baby has milk allergy, both siblings had milk allergy also, and hates the taste of milk free formula…vomits after feeding and now refuses. They live in Croatia. I wonder if there is a homemade formula using other protein source, etc. that mom can prepare at home to feed baby without causing strain on kidneys or cause other allergies. Please advise. Thank you.