A 28-year-old mum, Hira Ahmad, who has a rare recessive condition known as Bruck syndrome and who is from Wandsworth, London is believed to be the first in the world to give birth to a healthy baby.
Hira gave birth to her daughter who is named Dua, on January 29, 2022. According to media reports, Hira told the PA news agency she wants to share her story to inspire other mothers with physical disabilities.
According to the National Library of Medicine, Bruck syndrome is a recessive syndrome consisting of bone fragility and congenital joint contractures, which results from stiffness or constriction in the connective tissues of the body causing a deformity. So far, less than 50 patients with this syndrome in the world are reported.
In fact, while growing up, Hira reportedly broke bones so regularly, she was in a hospital every three months.
However, Hira reportedly said that since the age of 12 she always had “hope” she would be able to have a child after a doctor told her that she would be able to get pregnant, nevertheless, she knew it would be difficult to do so.
But apparently, this did not discourage her from achieving her dreams. And at present, Hira wants to have more children – “Maybe when Dua is at an age where we can manage her, maybe later on in life,” she said.
Hira is now planning for Dua’s first birthday.
She is quoted as saying, “The year has just flown by, I still remember going into the theatre and being put down to sleep.
“Watching her throughout the whole process, throughout the whole year, grow – now she’s holding on to things and walking… I want to enjoy every moment.
“We will gather together on her birthday as family and friends… obviously looking at my case and the struggle and fear that I had, she is a very, very special baby so we will be having a huge gathering.”
Professor Asma Khalil, consultant in obstetrics and maternal foetal medicine at St George’s Hospital, has described Hira as “hugely inspirational.”
“Hira’s story is hugely inspirational and I know all of the clinical team involved in her care are all so pleased with such a fantastic outcome,” she said.
“We all wish Hira, her husband, and baby Dua good health and happiness for their future.”
Hira, who was reportedly supported by her husband Ather Amin, a 24-year-old MOT tester, had required specialist care during her pregnancy at St George’s Hospital in London.
And led by Professor Khalil, the special care measures reportedly included monthly blood and iron infusions for anaemia and foetal testing to check if the baby would also have brittle bone disease.
Speaking about the experience, Hira said, “It was the most excitement I’ve had in my entire life, knowing that she’s actually going to be a very healthy baby.”
She adds, “When the doctors clarified to me (Dua would not have the condition) I had tears of happiness in my eyes.”
Hira, who is an insurance officer at Wandsworth Council said, “People doubt you… they will say ‘you won’t be able to have a baby, it’ll be very difficult for you.’ ”
“But I just want to put out there that no matter what, don’t lose your hope,” she said.
“I want my baby girl to go out there and explain to people that my mum is someone who had Bruck Syndrome and is a wheelchair user full time, she’s got brittle bones, but she still managed to deliver me in the safest way.
“I want her to look up to me and have that inspiration from her mother,” said the proud mum.
In efforts to address the difficulties Hira would face in positioning herself during the birth to avoid injuries such as fractures or dislocations and given her unique case, doctors reportedly ran a simulated theatre trial.
Due to previous surgery for scoliosis, which involved a metal rod being used to straighten her spine to alleviate pressure on her heart, Hira reportedly brought Dua into the world, via C-section under general anaesthetic.
During her pregnancy, Hira was rushed to hospital, as she had gone into labour unexpectedly early, at 36 weeks. However, Dua was born without complications.
Hira reportedly applauded the care she received at St George’s Hospital, stating that the doctors talked her through every stage.
“I was very worried about the whole pregnancy itself because I’m quite a petite person and being in a wheelchair just brings more terror,” she said.
“When I had my first pregnancy scan, the doctors really satisfied me.
“They said, ‘we’re going to talk you through your whole process and we’ve had many stories like this, but obviously not your one exactly.’
“The doctors really helped explain that this case is one in which you know, it was my input as well as their input that made it come true.”
Though caring for Dua has been “difficult” for Hira, over the last year, she has supposedly been helped by her mother and husband.
“In the beginning, it was very difficult… holding a tiny baby and pushing yourself in a wheelchair from one room to the other,” she said.
“I couldn’t do it on my own of course… I have to have my husband’s help or my mum’s help always around me for me to be able to cater to her needs.”
Congratulating Hira, Jacqueline Totterdell, chief executive at St George’s, Epsom, and St Helier Hospital Group, is reported as saying, “I’m so very proud of the world-leading clinical team we have at St George’s.
“Our foetal medicine team are highly skilled specialists seeing patients referred from all over the UK, but it’s particularly heart-warming to hear such an inspiring story from someone in our local community benefiting from the services we provide.”
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