When Zyair was six days old he suddenly became critically ill. Medics worked for hours to save his life, before discovering he had several serious heart defects. After three heart surgeries, Zyair is now doing well. His mum, Natasha, shares their difficult journey:
Zyair’s heart defects weren’t detected during pregnancy. When he was born, he had difficulties feeding and we were told he had tongue tie. We had no idea that underneath it all, his little heart was fighting a battle we knew nothing about.
When Zyair was just six days old, he became unresponsive and was blue-lighted to our local resuscitation unit. He was critically ill and in severe cardiogenic shock.
After hours of the team working to save his life, we finally discovered that his heart was the reason he was so critically unwell.
He was transferred to the East Midlands Heart Centre, where we learned that he had coarctation of the aorta, a hypoplastic aortic arch, a large PDA (patent ductus arteriosus) and muscular VSDs (holes in the heart).
At just 11 days old, Zyair underwent his first open heart surgery to repair his coarctation of the aorta and hypoplastic aortic arch. His muscular VSDs could not safely be closed at the time, so a pulmonary artery (PA) band was placed to protect his lungs from excessive blood flow.
Since then, Zyair has undergone another two open heart surgeries and two cardiac catheter procedures. His second surgery involved removing his PA band and closing two VSDs, while his third, in January 2026 involved repairing his mitral valve and removing a subaortic membrane.
Along the way, we were also told that Zyair falls under the umbrella of Shone’s complex.
Nearly three years on, Zyair is doing well. He is energetic, cheeky and full of life and he has taught me more about resilience than I ever could have imagined.
One of the CPICU nurses once told me, “Cardiac babies are built differently.”
At the time, I didn’t understand what she meant.
Now I understand every word.
Zyair is fierce. He is resilient. He is mummy’s little fighter.
Sharing his story is important to me because I want other families to understand why early detection of congenital heart disease (CHD) matters. Had Zyair’s heart condition been detected before he became critically unwell, he could potentially have been admitted, started on treatment and cared for by a specialist cardiac team while being prepared for surgery.
I will never know exactly how different those first six days could have been. But I do know that early detection can give babies and their families something incredibly important: time.
Time for specialist teams to prepare. Time to start the right treatment. Time to get a baby to the right place, with the right team, at the right time.
In October 2026, Natasha is taking on The 100 Challenge to help the one in 100 babies, like Zyair, who are born with CHD. Passionate about ensuring other heart babies receive a diagnosis as soon as medically possible, Natasha will walk 100 miles to raise funds and awareness. You can support her here.
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