Leo’s story
Written by Mum Lucy

On the 26th of December 2016, we sat in the parent’s room of the NICU at the Norfolk and Norwich University Hospital, waiting to hear what was wrong with our perfect, nine-day-old baby boy. Leo developed a slight cough on Christmas day and started to struggle with his breathing on boxing day, so we called 111, who sent an ambulance over straight away.

The amazing CATS team transferred us to Royal Brompton Hospital, where after several more tests and what felt like a lifetime, we were informed that he would need surgery to fix his heart. Leo was diagnosed with a coarctation of the aorta, which meant that when the ductus arteriosus narrowed (which usually occurs a few days after birth), his blood could not pump to his lower limbs or organs properly. If untreated, this condition is fatal.

The incredible team of doctors, nurses and surgeons talked us through each step and reassured us that they would look after our darling boy and do everything they could to fix his heart. However, as he was still stabilising with fluids and glucose, they wanted to wait a day or so for his surgery to ensure the best chance of success.

Leo was admitted for surgery in the early afternoon on the 28th of December. The operation was a success, but we still had to wait to see if he would wake up and how he would react to breathing after being ventilated for several days. The nurses were fantastic at reassuring and keeping us informed. At the same time, every doctor and specialist we saw were patient with us, explaining things several times as we struggled to absorb the information!

I can’t voice enough how fortunate we feel to have been looked after by such an amazing team. The kindness and professionalism shown by the doctors, nurses, cardiac specialists/consultants, and brompton fountain family liaison officers was exceptional. They saved our baby’s life and reassured us, as terrified, first-time parents, that he was in the best possible hands.

The support we received from the fabulous breastfeeding support staff also allowed me to continue breastfeeding as soon as Leo was strong enough to feed without his feeding tube.

To look at him today, he is the most chatty, smiley little boy we could imagine, and his development is back on track. This is despite having spent seven days in intensive care at just sixteen days old, five of which were spent on a ventilator and IV fluids, keeping him alive.

Thank you, Royal Brompton Hospital.

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