New mum, Hira Ahmad, is thought to be the first woman with Bruck Syndrome to give birth to a healthy baby.
There are less than 50 recorded cases worldwide of the condition, which causes Hira to have brittle bones, restricted growth and means she uses a wheelchair.
But thanks to expert care throughout her pregnancy, baby Dua was born without complications on 29 January 2022.
Now, the delighted mum wants to be an inspiration to others with disabilities.
Hira, 28, said: ‘People doubt on you… they’ll 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.
‘I want my baby girl to go out there and explain to people, “My mum is someone who has 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.’
Hira, an insurance officer from London, was born with the condition, and was told aged 12 that, while she could get pregnant in the future – it would be difficult to do so, as medics have such limited knowledge of the condition.
She said: ‘I used to cry sometimes at night, thinking, ‘How is this going to happen?’
During her pregnancy, Hira required specialist care during her pregnancy at St George’s Hospital in London – with doctors even carrying out trial theatre births.
She said: ‘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.
‘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”.
Led by Professor Asma Khalil, special measures included monthly blood and iron infusions for anaemia, and foetal testing to check if Dua would also have brittle bone disease.
‘When the doctors clarified to me [Dua would not have the condition] I had tears of happiness in my eyes,’ said Hira.
The theatre trials were done in the hope of pre-empting difficulties Hira might face when giving birth – particularly in terms of how she would position herself to avoid fractures or dislocations due to her stiff joints and brittle bones.
Hira went into labour unexpectedly early, at 36 weeks and after being rushed to hospital, Dua was born without complications at St George’s in London. She gave birth via C-section under general anaesthetic.
Hira, who lives with her husband, Ather Amin, 24, said caring for Dua hasn’t been easy.
She said: ‘In the beginning it was very difficult… holding a tiny baby and pushing yourself in a wheelchair from one room to the other
‘I couldn’t do it on my own of course… I my husband’s help or my mum’s help, always.’
Now, Hira hopes she may one day have more children.
She said: ‘Maybe when Dua is at an age where we can manage her, maybe later on in life,” she said.
‘I really want to, but I’ll have to look at my health at that time and make the decision later on.’
For now, Hira and Ather are planning their daughter’s first birthday.
She said: ‘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. [After] the struggle and fear that I had, she is a very, very special baby, so we will be having a huge gathering.’
Professor Khalil, consultant in obstetrics and maternal foetal medicine at St George’s Hospital, described Hira as ‘hugely inspirational’.
She said: ‘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.’
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