IN-BETWEEN her tears Shauna-Gay Mitchell paused as she was about to ask: ‘Why me, Lord?’ when she saw her newborn son.

The sight of the boy, whom she has since named Marley, was not what the excited mother had expected.

According to Mitchell, the mood in the operating theatre at Victoria Jubilee Hospital before she gave birth was “festive”.

“We were all betting on whether it was a boy or girl. So everybody was happy, and after the baby was born the mood just changed, and I knew something was off,” Mitchell told the Jamaica Observer.

“Then I saw him, this pretty little baby, because his face was perfectly fine, and everything else seemed fine except the feet, and they took him away,” she added.

According to Mitchell, the medical professionals who performed the Caesarean section did not appear to have any knowledge about the baby’s condition. “They didn’t tell me anything at all,” she said.

“I didn’t find out what it was until another paediatric surgeon came to me and told me the name,” she stated.

Immediately, she called the baby’s dad, Omarie Case, with whom she has another son, Caleb, six, and a daughter, Tyla-Marie, eight, and told him what the doctor had said.

She admitted that she wasn’t sure that she gave Case the correct name of the condition. However, shortly after, Case called her back and asked her not to do an Internet search of the illness on the portable device she had taken to the hospital.

“He said ‘Shauna, don’t do it because you don’t want to see what it’s like’. He said ‘Shauna, the baby will be fine, just don’t go online’.

“So I obeyed, thank God, because if you search the name, the images are gruesome,” she told the Sunday Observer.

She didn’t see her baby until two days later, mainly because she needed to recover from the surgery. But when she saw him, she bawled.

“Just as I was about to ask ‘Why me, Lord, I stopped, and said, ‘Why not me?” Mitchell told the Sunday Observer. “Why should it happen to someone else?”

Marley was born with a very rare condition — epidermolysis bullosa (EB) — an illness that causes the skin to be fragile and which is reported to affect one in 50,000 newborns.

According to the National Institute of Arthritis and Musculoskeletal and Skin Diseases, the fragility of the skin can result in it being easily injured, causing the formation of painful blisters.

“These blisters can cause serious problems if they become infected,” the institute explains on its website.

The institute is an American Government agency that supports research into the causes, treatment, and prevention of arthritis and musculoskeletal and skin diseases. It also supports the training of basic and clinical scientists to carry out this research, and assists in the dissemination of information on research progress in these diseases.

While the illness, which has no cure, usually shows up in babies or at the early stages of a child’s life, some cases are known to have developed during adolescence or early adulthood.

Most cases of EB, as the illness is called, are hereditary. However, Mitchell said that as far as she is aware there’s no history of the illness in her family.

“So, if somebody had a mutation of it, it’s so small, they probably don’t realise they have it,” she reasoned.

“I really don’t know, maybe it’s an act of God. I really don’t know,” the 30-year-old mother said.

“I feel Marley came here for a reason,” she added as she smothered the 16-month-old boy with kisses and hugs. “God gave us Marley because He knows we will shower him with love.”

Mitchell had expressed similar sentiments on her blog last September: “Now I’m not saying we can work magic….psssh, we barely even know where to start but we will love Marley so fiercely that he will see beyond his struggles with EB, he will become a happy, balanced man someday. And, he is such a happy, gleeful baby already,” she wrote.

The attention that Mitchell gave him throughout the hour-and-a-half that she sat with the Sunday Observer was an extension of her daily routine.

Feeding him, for instance, requires her to prepare liquid foods, including smoothies, which she squirts from a nipple bottle into his mouth.

“His tongue is really fragile, and even without him sucking on anything it blisters,” Mitchell explained.

“I was never able to breast feed him. That cut me up more than most things, because I had such huge plans to breastfeed him for a year,” she admitted.

Mitchell, though, is looking forward to the days when she will be able to cook for her son, even as she keeps in mind the warning from his dermatologist, Dr Michael Fitz-Henley, that EB patients usually have great dental difficulties.

“I pray hard on that one, because when I look at the pictures of other people who have EB and talk to other people — because there is a community of them on Facebook, thank God for that — they tend to be afraid to brush their teeth because it’s really painful,” Mitchell said.

The nature of the condition requires that Marley be bandaged to protect his skin as it can easily peel if it is rubbed.

That has resulted in Mitchell and her partner forking out at least $11,000 per month to purchase bandages. Gauze alone, she said, would run them approximately $1,800 per box and, in most instances, she will use almost all of them in one wrapping.

To keep the costs down, Mitchell has devised a system of washing and reusing the bandages.

But is that safe? the Sunday Observer asked.

“I figured out how,” Mitchell responded with a smile.

“I came up with a process and it works. I bleach and boil them, then soak them back in baking soda. I do one heap a suppen’. I pray to God to guide me. When people say to me ‘Oh Shauna, you’re a super mon’, I’m just winging it,” Mitchell said.

Although Mitchell and her partner have accepted Marley’s fate, they are interested in having him undergo a test — available overseas — that will tell them what type of EB he has.

Dr Fitz-Henley, she said, is encouraging them to have the test done, but the cost — approximately US$1,600 — is prohibitive, and they would prefer to continue securing the bandages using the salary her partner earns from his job at Digicel and anything she brings in doing freelance work as a web developer or on film documentaries and commercials.

But getting those jobs, Mitchell admitted, is difficult because of the care she must give to her son.

For example, she bathes him in saline water and changes his bandages every other day, a process that takes about two hours.

In addition, because of his condition Marley “wakes up a lot” and “itches a lot”.

“If I can say I miss anything it’s good sleep,” Mitchell said, again with a broad smile.

With that kind of demand on her time, she said, “I can’t give a client an excuse as to why I can’t deliver on time”.

Add to that the fact that Mitchell, who holds a degree in media and communications and Spanish, home-schools her other two children who, she said, compete to spend time with Marley.

“It’s making them so mature; they’re very protective of him,” she explained.

Mitchell, though, believes she was being prepared for Marley during the time she worked at the Digicel Foundation after an earlier stint at the telecoms giant during her university days.

She recalled a Christmas event staged by the foundation in 2012 for special needs children.

“This little girl went on stage and sang Jesus Take The Wheel and I just started crying,” Mitchell confessed. “I believe that day I formed a special bond with special needs children.”

She wants to share her experience with other Jamaican parents who have children afflicted with EB, just as she has been exchanging notes with EB patients and their parents on Facebook.

Mitchell also pointed to the Dystrophic Epidermolysis Bullosa Research Association of America website — debra.org — where services and support are provided for people with EB.

In addition, the non-profit organisation based in New York is dedicated to finding a cure for the illness described as the worst disease you never heard of.

Asked whether she would accept help from anyone wishing to assist, Mitchell reluctantly said “yes”.

Her e-mail address is shaunagay.mitchell@gmail.com.