By Jessica Jones
Mommy to Matthew
Recessive Dystrophic Epidermolysis Bullosa
Born March 2024
I had two miscarriages before my pregnancy with Matthew, so I was very, very nervous. But I had a normal pregnancy with him up until the day I was induced because my blood pressure was high. I was 38 weeks, so the doctor said we were just going to induce so my blood pressure didn’t get any higher. Well, 40 hours and a C-section later, Matthew arrived.
My husband brought him over for me to see and said they were going to take him to the NICU because there was something wrong with his skin. Never in a million lifetimes did I think I would hear the words the dermatologist told us a couple of hours later.
“I am 95% sure I know what this is, but we have to do genetic testing to be sure. It is called Epidermolysis Bullosa. Do not go and Google this. I am just going to lay it out. You will live longer than your child. Depending on the exact type depends on life expectancy. You may have months or he could live to be 20.”
After that, my head was in a blur, and I do not remember much of the next few days.
Before Matthew was born, I had so many plans and dreams. I wanted him to play soccer or baseball. Once he was born, that ALL went out the window. With his skin being so fragile, there is not much of a chance that he will ever get to play those sports.
I did get to go hold Matthew eight hours after he was born. He was born without skin on his left foot, and by the time I got to see him, he had blisters all over his fingers and his lips. He was wrapped up with gauze, and they had given him morphine to settle him down because he was very inconsolable due to the pain.
Matthew was in the NICU for three days, and then we got to go home. We had to wait about a month for the genetic testing results to come back. I will never forget that call with the results because I was at Walmart and had to go find somewhere quiet so I could hear her.
She said, “I have good news and I have bad news.”
My heart sank. I told her to just tell me.
She said, “He does have EB, but it is not the type I was thinking it was, which is good. He has Recessive Dystrophic Epidermolysis Bullosa.”
My first question was how long he would live. She said it’s really hard to tell, but he may live to be in his 20s or 30s. He is at a very high risk for squamous cell carcinoma, and she told us to expect complications with feeding and growing. He may also have trouble walking due to wounds and pain.
It’s hard to know where to begin when describing the impact Matthew’s diagnosis has had. EB has been a struggle for our family. We cannot be out in the heat. Matthew has to have his dressings changed once a day, and that takes a couple of hours. When he was first born, his dad and I had no idea what we were going to do with a baby we could barely hold without damaging his skin. We didn’t know how to physically handle our child, and he screamed almost all day, every day, due to pain. Over time, we learned different techniques for picking him up and different ways to put his dressings on and sooth his pain.
We got connected with On Angels’ Wings around October 2024. One of Matthew’s doctors gave me a brochure and told me to look into the organization. Our first session was an indoor session, and we had a lot of fun. They continue to provide annual photo sessions and support us on this journey.
Matthew has never been to daycare. Nobody will take him. They tell me that it is a liability, and they are probably scared — and I totally get it. I would rather them not take him if they are uncomfortable. Because of that, however, his dad and I work almost opposite shifts so one of us can be home with him. That has been the biggest struggle and strain on our family. We hardly ever get to see each other, and it feels like, when we do, we’re mostly giving each other reports on our own child. Our families do not live nearby to be able to help out, and I know for sure that they would be there in a heartbeat if they did.
Matthew’s biggest struggle has been feeding. Blisters in his mouth and throat have made it difficult for him to eat enough real food or even pureed baby food. When he began losing weight, we made the decision to have a G-tube placed to supplement the calories he needs to heal and grow. That has been the only time Matthew has stayed overnight in the hospital since his NICU stay. Because he is at very high risk for blisters in his airway due to intubation, he was placed in the PICU after surgery so they could closely monitor him. Fortunately, we got to bring him home, because even a simple G-tube surgery — that has minimal complications for everyone else — is dangerous for children with EB.
Matthew is now 2½ years old, and he is the happiest little boy I have ever met despite his constant pain and intense itch. He absolutely loves people. He walks right up to strangers and just wants to smile and interact. Matthew also loves animals. Anytime there is an animal around, Matthew will be the first one there to snuggle it up. Matthew lights up any and every room he enters.
Ultimately, we hope for a cure for EB. How realistic is that? We do not know. So we really try to be realistic and live knowing there may not be a cure. We feel like if we get our hopes up and something bad happens, we will be even more heartbroken than we already are.
Our hopes are for Matthew to be able to eat real, solid food and, as he gets older, to be able to do some of the things his peers do. I hope he understands why he “looks different” and is confident in himself and his diagnosis, and that he won’t get picked on. He will be fighting EB every day until it is his time to go, so we’ve learned to just enjoy every single moment we get with him.
OAW has been nothing short of amazing. We’re currently planning our third photo session with them. People call, email or text just to check in and see how we’re doing. We cherish the pictures we have and those we will have done in the future to preserve memories of milestones and remember what it was like when Matthew was “that little.” The pictures they offer give families a reason to forget about the bad things for a moment. And they help you to know that you’re not alone.
