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- Girl can’t hug parents because rare skin condition causes her to blister when touched<\/a><\/li>\n
- Video: Mom Can’t Hug Baby\u00a0<\/a><\/li>\n
- Little Boy Blisters When He’s Touched Due to Rare Disorder<\/a><\/li>\n
- Adorable five-year-old girl can’t hug her mum because of rare fragile skin disorder<\/a><\/li>\n
- Heartbreaking: Parents Can’t Hold Baby For Fear Her Skin Will Come Off<\/a><\/li>\n
- ‘Blister baby’ whose skin is so sensitive she cannot be cuddled<\/a><\/li>\n<\/ul>\n<\/li>\n<\/ul>\n
I’ve often had issues with these kind of titles, because they imply that we cannot touch or hug our children at all<\/strong>, 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.<\/p>\n
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<\/a>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<\/strong> 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.<\/p>\nThis is from my book Butterfly Child<\/a>:<\/p>\n
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.<\/em><\/p><\/blockquote>\n
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<\/a>” 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.<\/p>\n
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<\/a>….<\/p>\n
- Video: Mom Can’t Hug Baby\u00a0<\/a><\/li>\n
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