The Everyday Challenges of New EB Parents

*Seek advice from your licensed healthcare professional in regards to your healthcare needs.

Another role that I fulfill in addition to my responsibilities with Hollister Wound Care is supporting DebRA in the New Family Advocate Program, a program that I started for the non-profit five years ago, after my daughter passed away. During this time, I’ve met many families across the country and learned quickly that every EB family is different. Some parents are eager to meet and want a home visit when their baby is only weeks old. For other families, it takes a little longer to ask for help. And others who may have a child with a milder form of EB find that simply talking on the phone once in a while is just the support they need.

Whenever I schedule a new home visit, I find out a few things before we meet, including what kind of products the family is using (such as medical supplies, diapers, bedding, etc.) and then I’ll bring samples of products they may never have heard of before, so it gives them an opportunity to try it first before investing in something new. I’ll usually watch them do a dressing change and offer tips and advice. I also share some everyday strategies that seem to work for other families regarding such things as grooming, clothing, footwear, and common personal items and household products that other families tell me about. And while I’m there, I look for ways that I can help connect them to the resources they could use, whether it’s a medical supplier or support group in the area. My visits can take a few hours or much of the day, depending on the severity of the baby’s EB and how many topics the parents would like to cover while I’m there.

But regardless of their situation, many new EB parents share a lot of the same questions and challenges on a day-to-day basis. Some of the most common questions I get when I go out on my home visits are:

Q: How did my child get EB? It doesn’t run in my family.

A: Here, I’ll go through the genetics of EB with the family. The key thing to remember is this: different types of EB are caused by specific genetic mutations, and you can only pass on the genes and mutations that you have. Some patients may inherit it from an affected parent and in other cases, parents may have no history of the disorder in the family but carry a copy of an altered gene though they show no signs or symptoms.

Q: What do I do when the baby starts to crawl? Should I let them?
A: Yes, you should let them crawl. It can be difficult as a parent to let go and not be the ultimate protector, but it is important to let your child be a child and go through the developmental stages and there are ways to protect the knees and hands during the crawling phase, which I’ll then share with the parents.

Q: How long will my baby live?

A: This question is one of the toughest to answer, because every baby is different. Each type of EB is different, too, with a range of severity levels. There is always hope that their baby will live a long time.

Q: Is there a cure for EB?

A: No, there isn’t, not at this time, but advanced studies are being trialed right now, and many of us are hopeful that there will be some useful findings to come from these studies.

I enjoy what I do, even though sometimes it can be challenging but giving parents a sense of relief that someone is out there who’s “been there, done that” helps me feel useful. They feel like they can ask as many questions as they want, and I want them to feel empowered and strong so they can grow into a role as their child’s advocate as well as that of parent.

When I leave a family after a home visit, I hope that they have a better sense of how to prepare wound dressings and which ones to use and when. I hope that they feel like they have all the tools they need and know exactly where to go when they need help and aren’t afraid to reach out to others.

And then of course, there are the babies. I love babies. I relish every opportunity that I get to share with new parents the importance of continuing to nurture and physically hold and touch their babies throughout what may seem like a scary time. When I’ve done this, I feel like I’ve done my job.

I always look forward to the next family and the next home visit, to remind new EB families that they are not alone in this battle. None of us are. Don’t you forget that either.

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