There’s a 50 per cent chance an expectant mom in Moncton will give birth to a baby with the same rare, genetic skin disease she lives with.
Since Emily Boros-Rausch is believed to become the first person with epidermolysis bullosa to give birth in New Brunswick, a team of health-care workers has been formed at The Moncton Hospital to prepare for the baby’s arrival. She’s due any day now.
“When we when we first found out we were pregnant, it was such a mix of being so overjoyed, but also kind of so terrified,” she says.
Boros-Rausch describes the condition as having “extremely fragile” and blistering skin “often described to feel and look like a burn.”
“Your skin is your largest organ, so it can actually affect almost every aspect of your day, even just waking up some mornings and figuring out what clothing that I’m going to wear that’s not going to rub and cause friction, which causes blistering.”
It’s estimated 500,000 live with the condition worldwide, so needless to say, there isn’t an abundance of resources available.
Boros-Rausch says there are only two EB clinics in Canada — in Toronto and Vancouver — but due to pandemic travel restrictions, it’s not possible to receive care there.
“I also realized pretty quickly that there were no EB specialists here because there’s no one else with EB here,” she says. “But I was pretty lucky to find amazing doctors that were willing to just research and learn and figure it out together.”
She says she’s only aware of about a handful of people with the condition on the East Coast.
“There might have not been an EB specialist before, but I can definitely say now, my doctor is for sure an EB specialist after dealing with me for the past nine months,” Boros-Rausch says.
Moncton Hospital ready
Due to the 50 per cent chance her baby could be born with EB, doctors will have to treat the case as such until test results come back.
“This is something we haven’t encountered at our hospital before,” says Dr. Carla Roberts, an ob-gyn at The Moncton Hospital.
When asked if anyone else living with EB has given birth in the province before, Bruce Macfarlane, a spokesperson for New Brunswick’s Department of Health, said the department is “not aware of anyone who lives with Epidermolysis Bullosa giving birth in New Brunswick.”
Staff at the local hospital certainly are not taking any chances.
“We have to be extra careful to not cause any injury,” Roberts tells Global News. “Everything is sort of focused around what is safe, in terms of blood pressure cuffs, blankets for mom, blankets for baby, we can’t use any regular adhesive, she has to have special adhesives, can’t take anything off, she has to be able to do that herself with a special spray.”
Specialized dressings have been compiled that would be safe for the delivery.
Roberts says a package, including special dressings that would be safe for delivery, have been compiled as part of a package that has “specific directives on what is safe and what should best be avoided to prevent any injuries.”
Roberts and other hospital departments are working to discuss Boros-Rausch’s case and precautions.
Despite the uncharted circumstances, Roberts says the baby will be in great hands.
“Luckily for the baby, should the baby be affected, that baby will have the best mom ever.”
Advocating for a better future
Boros-Rausch has reached out to specialists across the world during her pregnancy and done plenty of research to be as prepared as possible for her baby’s arrival.
“It’s been a huge learning curve,” she says. “It’s sometimes felt like a job getting up in the morning and start researching and trying to find information to just make informed decisions.”
For the past two years, Boros-Rausch has been involved with a group called Mia Thrives.
“Living with a rare disease you can feel so alone and isolated, and Mia Thrives is really trying to change that for the next generation,” she says, “and share positive stories about people living their best lives and thriving with EB.
“I’ve been working on compiling all that information and having it in one place so that going forward, the next generation maybe doesn’t need to go through what I went through being having so many unanswered questions and so many unknowns.
“I just hope that all that information is in one place that people can use to help them navigate through their future family planning and pregnancies.”
For Roberts, Boros-Rausch has been an inspiration.
“She is quite amazing, she’s an advocate for patients with EB and in doing so, she’s been able to help educate us as well,” she says.