TWO twin sisters’ genetic condition has made their bones as fragile as “eggshells”, their mum has revealed.
Maryam and Mia, three, were diagnosed with osteogenesis imperfecta after being born with dozens of fractures all over their bodies in September 2020.
SWNSMaryam and Mia, three, were diagnosed with osteogenesis imperfecta after being born with dozens of fractures[/caption]
SWNSThe condition has made their bones as fragile as ‘eggshells’[/caption]
The condition allows the bones to break and fracture easily – from a hug, touch or sometimes without a known cause.
The condition was so severe, doctors said the girls were unlikely to survive and told the parents to say their “goodbyes”.
Mum Rayan, 27, wasn’t allowed to hold her babies in her arms for five months while their tiny bones healed but despite the odds stacked against them, the twins made it home.
They have had “countless” fractures over the years and full-time mum Rayan handles each of them as if they are “China dolls” when lifting, changing, or hugging them.
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 while in the womb.
Rayan 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.
Maryam and Mia arrived on August 3, 2020, at 7.06pm and 7.08pm, weighing 2lb 15oz and 3lb 4oz, respectively.
Everything went smoothly until the neonatal nurse visited Rayan shortly after their birth.
Rayan said: “She said they have fractures all over their bodies.
“I said, ‘Are you sure you’re talking about our twins?’ They had to splint their arms and legs to try and heal 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.
RARE CONDITION
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.
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.
Rayan
Despite the odds against, the twins continued to defy the doctors’ expectations.
Rayan said: “Kids with OI have their own plan of care — different to normal premature babies. 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 started getting 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.”
The pair are doing well — they’re now able to sit unaided and had their feeding tubes removed in December 2022.
They had metal rods inserted into their arms and legs to strengthen their bones and reduce fractures.
Rayan also set-up a TikTok page where she shares their twins progress, and has a staggered 50 million views on one video.
The twins 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 the other kids their age.
“They have such amazing personalities but they’re polar opposites. TikTok has been a create 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.”
SWNSThe pair are doing well, they’re now able to sit up aided[/caption]
SWNSMum Rayan, 27, wasn’t allowed to hold her babies in her arms for five months[/caption]
What is osteogenesis imperfecta and what are its symptoms?
Osteogenesis Imperfecta (OI) is a genetic condition present from birth. Its primary feature is fractures usually caused by minimal impact.
It is a defect where collagen (the protein that is responsible for bone structure) is missing, reduced or of low quality, so is not enough to support the minerals in the bone.
This makes the bone weak, which in turn makes the bones easy to fracture.
Symptoms experienced by children affected by OI can range from very mild to severe.
The severity may vary between affected members of the same family.
They include:
Fractures can occur with minimal force – this varies from child to child.
Bones may have an altered shape, for example, they may be shortened or bowed.
The whites of the eyes may appear more blue or grey than normal.
Joints can be hypermobile or very flexible
Some degree of joint or bone pain may be present
Problems with formation of teeth (dentinogenesis, or DI)
Children with OI may tire easier than other children
Hearing problems are known to affect people with OI usually after puberty.
Children with OI tend to be shorter than other children.
Source: Great Ormond Street Hospital
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