Raising a child takes a village. This is one of the popular quotes many mothers can relate with. When that child is afflicted with a rare condition, then the challenges doubles nothing of which can make a mother surrender.
Hajar, 28, is a mother of two. But while one of the kids is physically normal, her second child, Thuraya, has Osteogenesis imperfecta. The said condition is a rare genetic disorder that causes increased bone fragility and it is something that is not common especially in Oman.
In May 2021, after two months of giving birth to her child, Hajar started her page on Instagram on a mission to find people who share the same journey with her and to spread awareness in the community on life as a brittle bone disease parent raising her newborn Thuraya.
“I’ve never heard about this disease before and felt devastated hearing the news,” she said.
Hajar's stage of pregnancy was normal until her 18 weeks pregnancy ultrasound appointment. She went to her doctor full of excitement to discover the gender of her baby. But that excitement was replaced with fear when after taking the ultrasound, she was told that her baby might struggle with a rare condition she never even heard about — “achondroplasia”. Three days later she was told she is having a girl with brittle bone disease.
“I was shocked and still in denial, we didn’t have any family history with this disease from my side nor my husband's side of the family,” she said.
As soon as Hajar went home she started searching on YouTube about the disease, and the shortage of information and proper representation in Arabic concerned her. She expanded her search and read everything she could possibly read online even in different languages until she ends up finding a private community for brittle bone disease parents in Facebook it made her feel safe and well prepared to welcome her baby.
“Getting accepted into the group wasn’t easy but once I get in, I felt safe and confident even for the worst-case scenario, I had full understanding even with the medical terms,” she said.
“Knowing that you could lose your child over un-special trained medical staff was the most devastating feeling,” she lamented
When Thuraya was born, she had her Femur broken because babies' bones heal faster without splinting. Although it was written in her file that the baby requires minimal handling, it didn’t specify she had fragile bones, which the nurses weren’t prepared for.
She said, “I had faith and trust with the nurse believing they must know batter as I've been told, and if I knew the situation, I would’ve handled her from the beginning, I wanted that”
Every parent instinctively wants to protect their children. That’s why when Hajar's daughter was born, Hajar made sure her mother was around to check on her newborn in the nursery.
She recalled, “Few seconds left, and my mother sends me a video concerned about whether it's normal for the baby to cry like that, I then noticed how wrong the nurse was moving her recklessly and didn’t even know how to change the diaper”.
Through grief and helplessness, as well as deeply committed love, what happened made her learn how to be more than just a mother to be a nurse for her baby too.
“Entering hospitals became a horror to me,” she shared.
The incidents made Hajar take care of her baby on her own even when she enters any clinic or hospital, she asks them not to carry her baby and how willing she is to do anything they want. She didn’t always get a welcoming response from them.
“At first I couldn’t handle the doctor’s response to me but now I care less about them and make sure they follow my instruction," she said.
Recalling an incident when she went to a private clinic to see its potential.
She said, “I saw the physician take my daughter's hand and wanted to twist it, the most serious part of taking care of a brittle bone patient is knowing how to move them and he was doing it all wrong.”
She added in a moment of weakness, “I couldn’t control myself and screamed at him. If he wants to observe what she capable of doing, he should’ve asked me because he knows it’s a special case and his unprofessional move could’ve ended her life.”
She said, “I’m fully willing to train the entire nurse’s staff of maternity department on how to deal with brittle bone disease newborns."
"The more I read the more I realize the gaps of knowledge”
After she got birth to her child a doctor made her join a WhatsApp group for rare disease parents the mothers in the group were helpful and welcoming, but Hajar sensed how the information they share get lost in the group and how mothers forget mentioning so many details as their kids get older. It inspired her to start her own page on Instagram documenting her experience as a brittle bone disease parent in Oman raising her newborn Thuraya.
She said, “I wanted to document everything; I never want a mother to feel lost and to find a comfort way to cope.”
A few months after starting to post on Instagram she gained three thousand followers Mothers from not only Oman, but UAE, Saudi Arabia, and Iraq were showing support and interest in the content she posts.
“Families with brittle bone disease newborns keep expressing their gratitude to me and how they benefited from my posts” she shared
"I had old parents who are illiterate coming to me asking for details and I always try to be very open answering them or help them search for an answer” Hajar added.
Hajar sending a message to new brittle bone diseases parents “Parenting a rare disease child in our shoes comes with rewards that only we can see, each child with this condition has his own special thing, they are smart.”
“The beginning always takes a toll, but you have to be open, and search everywhere don’t listen to the advice of one doctor or a page on the internet because each condition varies from another, and you are the only one noticing those differences better than anyone,” she added
Currently, Oman has the best internationally recognized treatments for brittle bone disease. Bisphosphonat acid that is added to the vein and the bone absorbs minerals in the blood, so it thickens and delays fractures with zoledronic Acid. It is given to the patient every 3 months.