LIZ AND CLAUDIA SCANLON:Our daughter seems to have this inner light. Life has been tough on her but she keeps the best side out
I HAD a wonderful pregnancy. It was our first baby and I gave birth to Claudia naturally. But I had a feeling there was something wrong, because there was a bit if hustle and bustle.
Claudia was born with no skin on her thumb and no skin on her right foot. They said they were taking her to intensive care, but that it wasn’t anything to worry about.
It was strange going back to the ward without a baby. It wasn’t until the next morning, when I woke up and the bump was gone – you have this picture your whole life of the cot beside you. They said I could go up to intensive care anytime, so I found my own way up.
There was a lady at the side of the incubator taking notes, so I kind of just said to her, “Which baby is mine?” She said, “It’s this little girl”.
She said she was an EB (epidermolysis bullosa) specialist nurse and that Claudia was a suspected case. I’d never heard of it.
I didn’t get to hold Claudia; it was just very surreal. I went back down to the ward and rang my husband, Gary, who was on his way. I wondered, was I missing something?
It was as if the labour had happened, but there was no result at the end. I think I missed a bit of bonding really.
The next morning the consultant met us and told us about EB. To explain it: we all have three layers of skin, the dermis, the epidermis – it’s your collagen that knits these two layers of skin together. Claudia was born without collagen.
If they’d said cystic fibrosis or Down , I kind of would have understood better. I thought, how bad can a skin disorder be?
A touch will move Claudia’s skin. There’s nothing to hold it in place. Internally, the lining of all her organs – her colon, her back passage, her throat, everywhere skin is on your body – is affected.
To feed her and to wind her, I had to manipulate her to get her up on my shoulder without damaging her.
They said the worst thing was to go off and look at the internet, so we didn’t. We had enough to cope with trying to get her home – it was like, when can the three of us be together?
She came home four weeks later. I had to learn how to do the dressings.
The EB is the result of a faulty gene that I have and that my husband has – I think there was a one in 3.5 million chance that we would have met our genetic match.
For us there would be a 25 per cent risk in every pregnancy that we would have another child with EB.
Claudia is six now. Gary and I do everything together. Every morning we assess the damage done just from sleeping. She itches a lot from wound healing too. I feed her, disguising a load of medication in her breakfast.
Because the throat can blister and narrow, a lot of kids with EB end up being fed through a tube, but eating is one of the only social things she can do. She loves restaurants, ordering from the menu, and I don’t want to take that away from her.
EB really is a vicious circle. Because she is chronic anaemic, she’s on high iron. Because she’s on high iron, she’s very badly constipated and when she can’t pass a stool, it’s tearing her colon. When I say it’s a skin disorder, it’s so much more than that.
She goes to St Louis’s, a mainstream school in Rathmines. It’s the best thing that ever happened to her. She’s in first class. She’s extremely popular. She’s very articulate and she’s very bright.
From the first time I met that principal, nothing was a problem.
I change the bandages every two days, after school. It’s like dealing with someone who has third-degree burns. I fill the bath and soak them in water. She peels off the bandages – she’s a tremendous patient and a tremendous child.
Her pain threshold is definitely higher than yours or mine. I can give pre-bath medicines though I don’t do that often, but if Claudia says she’s in pain, she’s in pain.
I have all the bandages pre-cut out in a template because exposure to the air is painful. The trick is to get them back on as quickly as possible. It’s three hours from start to finish.
Her hands are fusing, her toes are gone at this stage and there’s a lot of scar tissue all over the body from old wounds.
Every stage has its highs and its lows – a tiny baby doesn’t stay still. Then we were good for a couple of years and then she hit four and all hell broke loose. It was a battle every single day and the whole house was on its knees.
Now reason has kicked in and with the reason has come control, so I let her be more in control because it’s her body. These are all learning curves.
At the beginning, I went for it hell for leather, but after two or three years, I got very tired. There is no end; it’s never going to be over.
Last year, after five years, I got a public health nurse who helps with two of the changes.
I believe that for every child leaving hospital with EB, the support should be there. I’m a mother, not a nurse. I’ve learned how to do it but it takes its toll. I’m meant to be somebody’s wife as well.
When you apply for a medical card, EB isn’t listed, but you’re seeing your child suffer every day. For people not to know what it is, it’s like it doesn’t exist, but by God does it exist. I’d just like to see more awareness generally of EB.
The hardest part of it is that with her EB, Claudia has a 70 per cent greater chance of getting skin cancer than you or I would. It might just take one bad wound that doesn’t heal.
I’m not living her life or my life saying a cure’s around the corner. I do believe that in her life there will be changes, but I’m really just keeping it in the day – loving her at six and next year, I’ll love her for being at seven. For me, these are the good years.
We love living here, but we’re moving to a bungalow now because the stairs are getting harder for her.
We keep everything normal in our lives, including EB. We never ever say we can’t do, or we can’t go – we do every thing and go everywhere another kid can go, maybe just with a different take on it.
She’s a smashing kid. People say that’s down to us, but I don’t know. She just seems to have this inner light. She’s like an old soul. Life has been tough on her, but she keeps the best side out.
As a mother, you can’t take it all on. Don’t think you’re Superwoman. I really love my husband, he’s really supportive, we’re a good couple and our daughter has made us closer. We’re a team and we’re in this together. When I’m tired he takes over – we help each other help our daughter.
For more information, visit debraireland.org/
In conversation with Joanne Hunt
