Hi, Chandra, EB is a very dreadful condition, it breaks my heart when hearing children were born and still living with this condition...I just hope that a cure can be found one day.
I think when you think of EB, like myself, the first time I was told about this condition and when the doctors tried to explain to us what EB is all about...it was all a bit blur, first, i thought, its only skin so its not so bad and we just had to be careful, then we sat down and began to realise its a lot more complicated than just fragile skin, in fact, skin is the largest organ and when its failing, every single part of the body is not going to function properly and the effect it has on the sufferer can be desvatating.
The type of EB DS suffered was the most severe type, so his health deterioated very rapidly. I don't know which type of EB the woman's son has but EB skin means 'friction' is a 'NO, NO' hence, we couldn't stroke his face or wipe his tears. Direct pressure is ok but not encouraged so we could put a 'very soft wipe' on his face to absorb the tears but couldn't wipe it. Couldn't really touch him becos we tried not to cause any friction as we didn't want to damage his skin any further.
Theres no way to avoid 'friction' as babies or kids have no idea they have fragile skin, DS had very sore 'belly button' becos the clump on his belly button caused severe damage ( we didn't blame the nurse as no one quite knew how to handle an EB baby when he was born ), his belly button was never healed...a lot of babies and kids with EB, ( i was told ), either born with nails missing or they eventually fell off so it can be very distressing to see children with no nails. Blistering isnt limited to childrens skin but also inner body linings so eating solid can be very painful. For DS, sucking teats ( even its the kindest way as he was fed with a very soft teat) caused blistering and his mouth was filled with blood a few times.
Changing his nappies was very hard, it's hard to see his sore bottom and loads of prepartion before we can actually changed his nappy, we had to check if theres any new blisters, if there was, we had to pop it becos if we didnt then it will get bigger and when hes kicking about, it made it very difficult to pop it with a needle, it all seemed very cruel but it had to be done before we could change his nappy but then cleaning his bottom was tricky too, unlike other babies, you wipe their buttom with a baby wipe, you couldnt wipe an EB baby so you could only dap it with a wet soft wipe, could take up to an hour or more)...then the daily routine of changing his dressings...its worse when in the summer becos dressings dried out more quickly and when it dried, it sticked to the wounded skin and it's heartbreaking to take it off...its a rountine which could last up to 4 hours and i have to say, each dressing changed was long and emotional.
When theres no skin to protect the child, like DS, his thrumb was left with no skin at the end, and infection became another problem, becos of infection, the rotten skin with blood often smell unpleasant and anti-biotic was introduced...but then the result of anti biotic was that he would ended up with runny poo and it caused more nappy changed and very sore button...so the problems caused by EB are endless.
Another issue was that becos of blistering, the body is constantly losing fluid so he needed special milk, high calories..but like i said, inner body lining was also affected, thats why he struggled to keep his milk down and we needed to give him infant gaviscon and other drugs which helped him to keep his milk down...dehyration can be a cause of death so its very important to make sure that he wasn't dehyrated but the final week of his life, he struggled to keep his milk cos blistering in his stomach..he was very weak at the end.
Becos the pain was unbearable, paracetmol and eventually morphine was used to ease his pain..but with morphine...it caused 'constipation' and so he had a hard time doing a poo and it hurted him very much...his fragile skin made it harder for him to do a poo and he struggled.
All in all, EB is a very complicated condition, its not just skin, its every single part of his body..when one drug was solving one problem but it also brought another as a result and side effect of the drug..as a mother, i had to monitor 9 drugs a day and some were given to him 5 times a day so hes basically taking drugs every hour. Sometimes, I could see the effects of the drugs on him, it left him feeling very uncomfortable and very unwell and he struggled every single day ...( he's only a baby when he died).
You know now that when i hurt myself by accident, like cut my fingers when chopping vegetables, I never mourn...I would think of DS and the pain he had to endure and I will then feel a bit sad...I had a son with EB but I could never understand how much pain he had to endure, I wasn't him. But each time when I see his picture, ( like now i have his photo on my desk when I am typing), I think he really gave me the courage to live my life and be stronger and happier. I have alot of respect for people, children living with dreadful condition, and for their carer...I know everyday was a struggle and when you cannot plan or dream but can only take it one day at a time, you have to be very strong...I often think, we as parents are supposed to teach our children, for parents like me, our children teach us how to live our lives and everyday I remember his beautiful soul.