Miracle baby’s fight for life wins hearts

A baby with a challenging combination of severe heart and lung conditions is home in Kuwait after over a year of specialist treatment from multiple specialist teams at Evelina London Children’s Hospital.

Obstetricians in Kuwait noted before birth that our patient, Abdulrahman, had a rare congenital heart defect called hypoplastic left heart syndrome, where the left side of the heart doesn’t form properly.

While still in the womb, he was transferred to Evelina London because of our world-class reputation for fetal cardiology and specialists in children’s cardiology and cardiac surgery. He was referred to leading expert Dr Owen Miller, consultant paediatrician and fetal cardiologist.

Abdulrahman’s life was saved several times as he battled to survive after being born prematurely at our private Westminster Maternity Suite, which has close links with paediatric cardiology. Other complex genetic diseases became clear after he moved to the paediatric intensive care unit.

Abdulrahman underwent complex neonatal cardiac surgery, where our surgeons performed the Norwood procedure (stage 1 of 3-stage heart surgery), a complex procedure which comes with many risks. After many years of experience refining the Norwood procedure, our team achieve world-class surgical outcomes.

Surgery was successful but Abdulrahman did not recover as expected. He started to get very unwell in the paediatric intensive care unit (PICU) and couldn’t put on enough weight to proceed to stage two surgery.

A series of tests, investigations and consultations found the answer – he not only had a complex heart condition, but he also had the lung condition primary ciliary dyskinesia, where the tiny hairs that clear mucous in the lungs do not work properly. The combination of hypoplastic left heart (HLHS) and primary ciliary dyskinesia is extremely rare – and primary ciliary aplasia with HLHS is believed to be a one-off in the UK. 

Abdulrahman was kept on a lung ventilator while many genetic and respiratory investigations were carried out. Throughout his many months in hospital, his parents stayed in the UK and saw him through the heartache of further complications, including an intestinal infection and two cardiac arrests.

However, Abdulrahman fought on and by May 2019 he was well enough to have the second procedure. With our multidisciplinary expertise at Evelina London across cardiology, surgery, respiratory and intensive care, Abdulrahman’s condition improved. In August, after his family were trained to give him physiotherapy and ventilation, he was able to make it home to his loving family where he continued his treatment.

Dr Owen Miller said: “Abdulrahman has had a very long, but a very coordinated and joined up journey, because he’s been in Evelina London. He progressed rapidly since his second surgery and looks like an otherwise normal baby. It’s an amazing success story.”

Baby Abdulrahman has won the hearts of all teams involved in his care. Our multidisciplinary approach meant we could draw from all our sub-specialities in-house and offer support from our international team working closely with the embassy, colleagues, clinicians and the family.