A woman with restricted growth wants to inspire others after becoming the first woman in the world with a rare, recessive condition to give birth to a healthy baby.
Hira Ahmad, 28 from south London, gave birth to a happy, healthy baby girl in January at St George’s in south London and is the first woman in the world to have done so with Bruck Syndrome, which fewer than 50 people have worldwide.
Hira was born with a genetic condition causing restricted growth and as she grew up, she was also diagnosed with brittle bone disease and scoliosis, which meant that she requires the use of a wheelchair. It wasn’t until she was pregnant and referred to St George’s for specialist care that a clinical geneticist explained she had Bruck Syndrome, which is associated with both brittle bone disease and arthrogryposis, causing joint stiffness.
None of this stopped Hira, though, and she remains extremely positive about her experience and wants to share it to inspire others with conditions similar to hers.
Hira said: “While I was pregnant, a woman with a physical disability approached me in a shopping centre saying ‘you’ve given me hope. I’ve always wanted to have a baby, but never thought this would be an option with my disability – but you’ve made me think this is possible, thank you’. I’ll never forget that, and I want other people to hear my story and realise that they, too, can carry and deliver a baby like I have.”
She added: “Other people would say ‘you must be struggling’ as a pregnant wheelchair user, but I wasn’t, I was so incredibly happy to be pregnant and having a baby. That overruled everything.”
Hira’s health complexities meant that she required specialist care from St George’s fetal medicine team throughout her pregnancy as the unit has exemplary standards of care and offers the most pioneering treatment for high-risk pregnancies for both pregnant people and their babies.
During her pregnancy, Hira had regular hospital appointments, monthly ultrasound scans, monthly blood and iron infusions for iron deficiency anaemia and was offered fetal testing to check if her baby would have brittle bone disease too – of which there was a 50:50 chance – and tests confirmed that the baby didn’t have the condition.
A simulated theatre trial was also arranged with Hira for the clinical teams led by Professor Asma Khalil to understand and find solutions to the difficulties Hira may have in positioning when delivering her baby avoiding injury – such as fracture or dislocation – of Hira’s joints or limbs and to ensure that all the necessary specialist equipment would be available for her delivery.
It also provided the opportunity to discuss her birthing plan as due to her previous spinal-fusion surgery for scoliosis – which involved a metal rod being placed in her spine to straighten and stop it from putting pressure on her heart – she couldn’t have an epidural, and as such required a caesarean section under general anaesthetic to reduce risk.
When Hira went into early labour at 36+4 weeks out-of-hours, Professor Asma Khalil was called into the hospital to deliver Hira’s baby as it was such a unique case, requiring specialist care as Professor Khalil had been treating Hira throughout her pregnancy.
Hira said: “I was always aware I’d have a different pregnancy journey to others, but I didn’t expect to go into labour in my 36th week. I was so scared going into theatre, but the fact that Asma was there, as well as Dr Ingrid Watt-Coote, the anaesthetist, midwives and the whole team, made me feel so safe.”
Hira’s birth was a success and a healthy baby girl, named Dua, was born with no complications.
Professor Asma Khalil, Consultant in Obstetrics and Maternal Fetal Medicine at St George’s, 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. We all wish Hira, her husband and baby Dua good health and happiness for their future.”
She added: “It was a fantastic multidisciplinary effort from consultant and midwife care to the anaesthetists, therapists and geneticists involved coming together to provide outstanding care – true team working at its best!”
Hira said: “Never did I imagine that I could get pregnant and for my baby to be delivered safely, so I’m incredibly thankful for my pregnancy, birth and post-natal experience at St George’s, we were totally in their hands and thanks to them we’re happy, healthy and safe. We couldn’t be happier – thank you.”
Jacqueline Totterdell, Chief Executive at St George’s, Epsom and St Helier University Hospitals and Health Group, said: “I’m so very proud of the world-leading clinical team we have at St George’s. Our fetal 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. Congratulations to Hira and family on the birth of baby, Dua.”
