"If we were not careful, his fingers would fuse together"

Taking care of a baby with Epidermolysis bullosa is difficult. Here is a true story of Aryan as told by his dad.

As a child, have you ever tried to hold a butterfly? Isn’t it so fragile? Even if you touch its wings, they bleed colour on your fingers. It is virtually impossible to hold a butterfly in your hand without affecting it in any way. And it is the same with children suffering from Epidermolysis Bullosa (EB), a delicate skin condition.

A genetic defect causes the skin to be so fragile that even a minor trauma, as minor as knees scraping against the floor while crawling may cause blisters. A recently published article on a website tells us the story of Aryan, a toddler suffering from EB.

Aryan’s story

Aryan’s dad, Dhanasekar Sampath, recounts his tale. Aryan received his routine vaccine after birth. However, Dhanshekhar noticed a small blister at the site of the vaccination. The nurse did not think much about it as it happens at times. But soon afterwards, the dad started noticing more blisters on other areas on Aryan’s body.

Dhanshekhar and Divya were alarmed and took Aryan to KK Hosptial. He was admitted there and a few tests were done. The conclusion – Aryan was suffering from this rare skin condition. He was then referred to a very busy specialist. With a lot of difficulties, they got an appointment. The specialist examined Aryan and gave the parents a rude shock – there is no treatment known for this condition. Aryan has to live with this condition for the rest of his life. With this knowledge, the couple embarked on a journey of constant vigilance and care.

What happens in EB

The skin has two broad layers: the outer epidermis and inner dermis. In EB, blisters form either in the epidermis (70%), the dermis (25%), or the junction between the two (5%). In fact, there are 27 different types of EB identified till the date. EB is rare with about 1 in 17000 children born with the condition. The cause is genetic. The parents may be a silent carrier and pass it on to the child unknowingly. But they know, the condition can be detected prenatally at about 11 weeks of gestation.

It affects both genders equally. The good news is, it is not contagious.

Here is a schematic from DEBRA, Singapore.

Find out more about EB at DEBRA Singapore

 

The blisters form as a reaction to any trauma to the skin. If ignored, they grow in size and rupture, leaving a raw surface. This may cause pain, injury, or even infection. And this was what Dhanshekhar and Divya were worried about. So, under the supervision of Dr Koh, they mastered the art of bandaging.

The idea is to burst the blister using a sterile needle before it becomes too big. This way, the inner layer of skins are not exposed much. The site is then bandaged properly. This is to be done daily. Imagine the emotional strain the family must be going through.

While recollecting the earlier days of learning how to bandage, Dhanshekhar says,

“It has become routine to do a full body check on our son every morning, then every two hours. If the blister is located on his arms or legs, Aryan won’t feel them as much. But it can be very painful in sensitive spots like the sole of his foot or the palms of his hands. So, we only poke these blisters when he’s asleep so that we won’t disturb him.”

They had to be really careful while bandaging any lesions on the fingers. Otherwise, there was a chance that the fingers would fuse together and it would be very painful to separate them.

Under utmost care and vigilance, Aryan is growing up. It is becoming more and more challenging to prevent any injury to the active toddler who loves to run around. Luckily, he has a milder version of the condition. And yet, the parents have to take utmost care to avoid any kind of injury to the child.

How can we help

EB ends up putting a financial strain on the family. The dressings are costly. The medicines alone can cost up to SGD 400 each month. Luckily, we have DEBRA Singapore, a support group for parents and patients suffering from EB. The organisation provides emotional as well as financial support to those who need it. And you and I can help children like Aryan by contributing to the cause. If you are so inclined, you can make a one-time or a monthly donation here. Even as little as SGD 5 can help someone in a way you can never imagine.

Our best wishes are with Aryan and his parents.

Story Source: Smartparents.sg

Image: DEBRA UK.

Republished with permission from: theAsianParent Singapore

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