01 April 2024 , 14:12
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Two twins with bones as fragile as “eggshells” can break a limb just from being hugged, knocked or even from sneezing.
Sisters Maryam and Mia were born in September 2020 with dozens of fractures all over their bodies, and were eventually diagnosed with Osteogenesis Imperfecta (OI). The rare genetic condition causes extremely fragile bones that can break and fracture very easily.
It was five months before mum Rayan, 27, was even allowed to hold her daughters in her arms, while their tiny bones healed from the multiple fractures they had sustained during birth.
The condition was so severe, doctors said they were unlikely to survive and to say their “goodbyes,” WalesOnline reports. However, despite the odds being stacked against them the twins made it home after a gruelling four-month hospital stay.
Since then the girls have had “countless” broken bones, the mum said. The slightest knock, sneeze or even lifting an arm too quickly has resulted in a break for the girls. Mum Rayan must handle them as carefully as a “china doll” when lifting, changing, or hugging them.
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Rayan, 27, with Mia (left) ands Maryam, she couldn't hold her babies for months after they were born (Rayan Serhal / SWNS)Full-time mum Rayan, from Atlanta, Georgia, said: “The doctors compared their bones to eggshells, they are that delicate. It’s a life-long condition so we will always have to be extremely careful with them. They're like little china dolls. Even though they’re delicate, they have big personalities."
Rayan was thrilled to find out she was pregnant, and discovered it was twins during the 12-week scan in January 2020. Everything went smoothly until the 20-week scan revealed they were behind on their growth. Doctors also spotted that they had bowed legs and arms in the womb. She said: “All our genetic tests came back fine so doctors said they would keep an eye on their growth.
“We could straighten their limbs, and they’d just be born a little shorter – we thought it was no big deal.” Due to their bowed limbs a natural delivery could be difficult, so Rayan was booked in for a planned c-section at 35 weeks in September 2020. The twins, Mia and Maryam, arrived on 3rd August 2020 at 7.08pm and 7.06pm, weighing 2lb 15oz and 3lb 4oz, respectively. Everything went smoothly until the neonatal nurse visited Rayan shortly after their birth.
The sisters, now three, were born with Osteogenesis Imperfecta (Rayan Serhal / SWNS)Rayan said: “She said they have fractures all over their bodies. I said: ‘are you sure you’re talking about our twins?’ Kept them on the pillows, gel to keep them comfortable. They had to splint their arms and legs to try and heal them. We weren’t allowed to hold them – it was horrible and overwhelming.”
The twins underwent dozens of tests and had to be on oxygen and feed tubes while they’re bones healed. Four weeks later, the sisters were officially diagnosed with Osteogenesis Imperfecta.
“The doctors believed they developed OI when a gene mutated when their egg split in the womb – it’s really rare,” Rayan said. It was type 2, the most lethal form. Doctors basically said don't think ‘long-term’ with them as they were unlikely to live.
“But we weren’t about to give up.” The couple found an OI specialist, who offered the couple help and advice. Despite the odds against, the twins continued to defy the doctors’ expectations. She said: “Kids with OI have their own plan of care – different to a normal preemie."
Rayan, 27, with Mia, 3 - she called the girls her miracles (Rayan Serhal / SWNS)“The more we fed them, the more their breathing struggled. “We had to lower their feed, and ween them off morphine, because their bodies are so fragile. They were starting to get better – smiling and more comfortable.” The twins were finally well enough to go home on 17 January 2021 – four months after they were born.
Despite leaving hospital, Rayan said they still needed round-the-clock care. Once they made it to age one in September 2021, their OI reduced to type three - which is less severe. But they are still extremely fragile.
She said: “We had to be so careful, we couldn’t scoop them up for a big hug. If they’re on the floor playing, even lifting an arm too quickly can cause a fracture. There isn’t much we can do – we just wrap them while they heal.”
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Mia and Maryam celebrate their third birthday together - their genetic condition causes extreme fragile bones (Rayan Serhal / SWNS)The pair are doing well, they’re now able to sit up aided, and had their feeding tubes removed in December 2022 and both came off oxygen in December 2021. They had metal rods inserted into their arms and legs to strengthen their bones and reduce fractures - Mia has rods in both arms and one leg, Maryam has both legs and one arm, so far.
Rayan also set-up a TikTok page where she shares their twins’ progress, and has a staggering 6.8 million views on one video. The twins also live at home with their little brother, 13-month-old Yusuf.
Rayan said: “They’re still very small but they'll hit all their milestones - just later than the other kids their age. They have such amazing personalities but they’re polar opposites. TikTok has been a great place to spread awareness for the OI community.
“Mia is the social butterfly - she loves people and is such an extravert. Maryam is the opposite, she's an introvert, shy and quiet, but so sweet. They are our little miracles."