Nicole Saylor’s son has the same genetic skin condition as Mickey. And she wants you to know — caring for a child with Harlequin Ichthyosis is not as scary as it may seem.
In 2014, my husband and I adopted an infant boy with Harlequin Ichthyosis (HI). Daniel is now a smart, sassy, mostly healthy 5-year-old!
So when I saw Mickey, another sweet little boy with HI, on Holt’s waiting child photolisting, I wanted to share about what caring for a child with HI looks like, and that HI isn’t as big of a deal as it may seem.
As I share with you the basic care required for this medical condition, I want to encourage you about three things:
- This photo of Mickey does not represent his potential. Mickey will likely be a strong, healthy, independent child — and man — someday. With proper care, his skin and eyes will look much better than this photo.
- The most perilous time for a child with HI is the neonatal period. Mickey has already fought through that time and is likely to thrive with good medical and emotional care moving forward.
- It is so important that Mickey receives attentive caregiving soon. If he doesn’t, he could go blind from the inability to blink, and he could be developmentally delayed because his hard skin makes it difficult for him to move around. Mickey needs the kind of care that only a loving, permanent adoptive family can provide.
For anyone considering adopting Mickey, I want to share with you — from my perspective as a mother to a child with HI — what his medical needs will likely be moving forward:
- Mickey needs extra fluids, extra calories and extra moisture on his skin. Some people with HI use feeding tubes, though many (like our son) do not. To moisturize his skin, our son takes an hour-long soaking bath daily, with moisturizer applied throughout the day. Some people do longer baths, shorter baths, showers, etc… A daily bath is what seems to work best for our son, though we modify it when on vacation without any long-term effects to his skin.
- Some people with HI have missing fingers or toes, though our son does not. This occurs in the neonatal period.
- Some people with HI deal with recurrent skin infections, though our son does not (and we are NOT super clean-freaks).
- Mickey will need to see, at a minimum, an ophthalmologist, dermatologist, ENT and pediatrician. Our son now sees each of these specialists twice a year. Most toddlers and preschoolers with HI benefit from physical therapy, occupational therapy and a nutritionist/dietitian. Our son has now graduated out of needing these services.
- People with HI are unable to sweat, so they are at risk for overheating. We manage this in the summer months with air conditioning, spray bottles and ice packs.
- As children with HI grow older, they need emotional support to deal with the social effects of living with a visible skin condition.
- Most children with HI are initially developmentally delayed, with the delays diminishing by about age 5 or 6. For example, our son sat independently at 12 months and walked at 23 months. But he now runs and climbs and swims like a typical 5-year-old!
We live in a state that provides medical assistance to children with disabilities regardless of the family’s income. Because of this benefit, our son has an in-home nurse five nights a week who gives him his long soaking bath, applies his moisturizer and provides his extra nighttime calories. Most families do not have the resources for in-home nursing care, but we have found it to be a huge blessing to us. Daniel has four older siblings with busy schedules, and my husband works a lot of hours, so the nursing care allows us to really thrive as a family.
Because HI is so rare, the support within the HI community is exceptionally strong. We often turn to each other for guidance and support because the doctors and other medical specialists typically don’t have much, if any, experience with HI. We would love to welcome you and Mickey to the HI “family”!
We are so grateful we took a leap of faith by saying “yes” to adopting Daniel. My hope is that another family will pursue that same tug on their heart for Mickey. Mickey is waiting, in need of a family. Without a family, Mickey will languish, never knowing his value and worth. And I believe there is a family somewhere out there who is waiting, in need of Mickey. Without Mickey, this family and their community will never know their full potential to love and be loved.
Written by Nicole Saylor, adoptive mom
Mickey Still Needs an Adoptive Family!
Today, Mickey is two years old! He is said to be cheerful and friendly. Since his last report, his caregivers report that he has progressed significantly in motor skills. He sits on his own, pushes car toys and plays catch with friends. He also loves playing with others and playing tag. Mickey communicates verbally, follows directions and is even learning to count to ten! He needs a loving, permanent family who can help him reach his full potential. Could that family be you?
If you are interested in learning more about Mickey, please reach out to our Waiting Child Coordinator at [email protected]. We can also connect you with Nicole if you’d like to ask her more about what caring for Mickey might look like.
I also have a darling and happy little 5 year old boy with HI. I agree with everything Nicole said so well. I’d be happy to share more insights with families. Mickey’s skin is just his outside – inside he’s a little child like we were. By the way, my wonderful adult son came to me through Holt on the best day of my life up till then.