When Maira Bibi gave birth to her adorable baby girl, Maryam (known as Mary) earlier this year, she said she came into the world crying, as most babies do. She was “delicate and fine” and her skin was just a little bit more red and shiny than other newborns she had seen. But the adoring mother thought there wasn’t anything wrong with her, and that she looked “pretty normal”. Maira enjoyed just three minutes with her baby at a Birmingham hospital before she was taken to be weighed and then quickly rushed the Neonatal Intensive Care Unit (NICU).
After some waiting, a doctor arrived at the delivery room and Maira asked immediately if her baby was ok.
“They said that she was fine and healthy, but there was one thing they said was crucial to note,” said Maira.
“They told us that Maryam had a bit of a problem. That she had a skin condition.”
When baby Maryam was born her mum said her skin was red and shiny, but she didn’t expect anything was wrong.
Parents Maira, 21, and Azmat Khan, 25, immediately assumed it was eczema as Maira struggled with bad eczema as a child, into her teenage years, and still has painful patches of eczema on her hands.
“What if I’ve passed on my eczema to her?” Maira feared. “It’s all because of me. It’s my fault she’s got a skin problem.”
However, the doctor informed her that Maryam’s skin condition was a genetic fault, a mutation in genes and that it wasn’t anyone’s “fault”. Instead of eczema, what Maryam has is much worse. The little newborn was diagnosed with a rare skin condition called Congenital Ichthyosis.
“Her skin grows way faster than normal peoples, so much so, that it forms a layer which then sheds off and comes back again,” explained Maira.
Maira listed the numerous medical complications her newborn may expect to experience: “dehydration, infections, chronic blistering, overheating, and rapid-calorie loss, and people with Ichthyosis are subjected to psychological issues.”
The nine-month-old’s mum dubbed her daughter a “mermaid baby” because of her unique skin which looks like scales.
Little baby Maryam will unfortunately carry this skin condition throughout her life and there is currently no cure.
After her birth, she spent a month in NICU where she was slathered in cream, head to toe, every two to three hours to stop the skin cracking and cutting, plus an ointment was applied to her eyes every four hours so they wouldn’t dry out because the skin is so tight around her eyes, she cannot blink. Maira also explained that her skin all over is extremely tight and the more she wriggles, the more she whinges and the more uncomfortable she is.
“She used to have cracks appear over her body within the space of a few hours, like little slits, but now we’ve got used to constantly keeping her moisturised,” explained her mum.
“Her skin reminds me of fish scales, because the patterns are such different colours when it’s drying and then that skin peels off just like a snake.”
“But I like to think she’s like a mermaid because of the appearance of her skin and the how smooth the scales feel.”
The financial costs of looking after a baby who demands a lot of time and medical attention are stacking up for the young working parents, so they are now fundraising to provide the best care for their daughter.
“We’ve already gone through two washing machines in seven months because of the damage caused to it from the Vaseline she needs on her skin – that’s even after we’ve soaked the clothes in hot water too,” Maira said.
“Any money raised from the campaign will go on buying things to make her life easier, from clothing to bedding, treatments and more.”
At first, Maira admitted she struggled to deal with stares in public but now she answers strangers’ questions about her baby’s condition.
“Despite her looking different it was love at first sight, I wouldn’t have expected her to have these problems, but couldn’t imagine our lives any other way now.”
People across the world have donated to help support baby Maryam and left comments for the young family.
“I hope Maryam is feeling better soon and I wish her all the best in life,” said one woman.
While Maryam’s story proves that life can be really unfair sometimes, it is her parent’s strength, dedication and optimism that reminds us just how powerful a parent’s love really can be.
