One of the mums on my group is by far the one who has been judged maybe more so than any. Why you may ask? Let me tell you all about my dear friend Steph.
Steph has two little boys, Harry & Cody and because the two boys suffer from the same rare and painful disease that causes their skin to blister it gives others the opinion that mum and dad are to blame. They have had to put up with whispering and pointing and other mums pulling their own children away from her babies.
The young Poole couple’s world was turned upside down when first-born Harry, now two, was diagnosed with Epidermolysis Bullosa.
When Steph, 20, fell pregnant again, doctors warned there was a one-in-four chance this baby would also have the condition – which normally affects one in 17,000 babies. The loving parents decided against an antenatal test, fearing it could lead to a miscarriage.
It became clear that little Cody, now five weeks old, had the same junctional EB – the worst type – just two days after his birth.
When Steph fell pregnant with Cody the judgement started yet again, why would a mother even risk having another baby?
Dad Chris, 24, said: “We really wanted to have another child that didn’t have EB. So we weighed up the risk.
“We were really excited but anxious throughout the whole pregnancy.
“Seeing Cody’s blisters was absolutely gutting.
Both Steph’s little boys have lost their nails and are kept wrapped up to protect their skin, which is so delicate because of a missing protein.
Because of people’s reactions, they have only been out twice as a family since Cody was born. “Days out are difficult,” Chris said. “We’d love to be able to go to the Sealife Centre, or to see a show or pantomime. Even the day-to-day things like going shopping have become impossible.”
Some parents think it’s contagious and pull their children away, while others assume Chris and Steph are to blame.
This is disgusting behaviour from others, perhaps if we even knew what Epidermolysis Bullosa was, we would know what we were judging this mum on and what are we judging her on, the desire to have another baby? Is it not her and her partner’s choice to decide whether to have another child, they are the ones who know the risks?
Is it anything to do with anyone else, do any of us really know if a child we bring into this world with be born 100% healthy?
Do we not all take that risk when we decide to have our own children?
So there was a one in four chance that Cody would also have Epidermolysis Bullosa, there was also a chance he would not.
I say my children are worth every risk in the world2” Chris said: “We’ve been in hospital and heard a woman saying ‘You’ll never guess what these people have done to their baby’.
“It’s not very nice being doubted as a parent. We’re constantly supporting Harry as best we can and other people just give us grief.”
Steph & Chris are amazing parents, who have two very beautiful little boys; those boys are part of The Supermum family and I for one am very proud to know them.
You can read the full article on Harry & Cody here