A lot of times, when seeing articles posted about children with EB, we see these sorts of titles:
- Girl can’t hug parents because rare skin condition causes her to blister when touched
- Video: Mom Can’t Hug Baby
- Little Boy Blisters When He’s Touched Due to Rare Disorder
- Adorable five-year-old girl can’t hug her mum because of rare fragile skin disorder
- Heartbreaking: Parents Can’t Hold Baby For Fear Her Skin Will Come Off
- ‘Blister baby’ whose skin is so sensitive she cannot be cuddled
I’ve often had issues with these kind of titles, because they imply that we cannot touch or hug our children at all, but… I get it. You need a “grabbing” headline to get people’s attention, even though it’s an exaggeration. In this society that is bombarded with information 24/7, to get people to “click” or watch, you need a NEON sign. And if there was a condition that needed a NEON sign, that’s Epidermolysis Bullosa.
While it is an exaggeration, it’s not exactly a lie. It is partly true. Children with EB, after all, are not called “Butterfly Children” for nothing. Their skin is sensitive, tender, fragile and vulnerable as the wings of a butterfly. You cannot hold an EB baby like you can hold a healthy baby. You cannot pick them up from the armpits at all, and you just have to be extremely gentle with them no matter what you do, from dressing them, to feeding them to changing their diaper. You cannot squeeze them, of course, but a gentle hug is perfectly OK. When Nicky was a baby I used to carry him around on a pillow a lot. When I think back I feel bad because when his little baby brother was born I held him a lot more simply because I didn’t have that fear of hurting him. Having that said, I know I cuddled Nicky to death, but I was afraid of others holding him because they hurt him on more than one occasion.
This is from my book Butterfly Child:
Another thing that freaked me out was that I could not trust anyone to come in contact with Nicky. No matter how gentle I would tell them to be with Nicky, they would end up shoving the bottle into his mouth, creating a blister, or picked him up under his armpits, creating a blister, or would try to do anything that would be absolutely fine to do with another baby, but most certainly not an EB baby. A point comes when you refuse to let anyone touch your child because you have to protect him.
I do believe that’s where the fear of a parent letting anyone even touch their EB child comes into play. I also read the book “Tough Cookie” and reading some of the mishaps of poor Bryon gave me chills. So, one by one, I had to teach each and every person that was going to come in contact with Nicky regularly how to touch him, how to hug him. Strangers? No way. I feel bad about it, but I would feel worse if they caused a wound. My child’s well being came first. Maybe that made me an overprotective mother from hell, but that’s how it is and how I was. Now that Nicky is older, he can let people hug him as he pleases.
Last year, as a matter of fact I squealed with delight as Kaley Cuoco hugged Nicky on the set of the Big Bang Theory and even posted this photo on her instagram feed….
See how gentle she is? She gets it. What an amazing thing. Nicky said she was a “little” rough, but he didn’t mind. I mean, how could anyone mind? 😉
Yes, Children with EB can be touched, they can be hugged, what’s most important to remember is that it’s not touch per se that causes blisters, it’s the friction. It’s friction that causes blisters or tears on their skin, so they can be hugged, just be gentle. <3
Love & Light,