Leo's story

Leo’s story written by mum Lucy.

On the 26th of December 2016 we were sat in the parents room of the NICU at the Norfolk and Norwich University Hospital, waiting to hear what was wrong with our poor, perfect, 9 day old baby boy. Leo had seemed to have a slight cough on Christmas day and started to struggle with his breathing on boxing day so we had called 111, who sent an ambulance over straight away.

We were transferred by the amazing CATS team to Royal Brompton Hospital where after several more tests and what felt like a lifetime we were told he was going to need surgery to fix his heart as Leo had 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 amazing 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 possibly could to fix his poor heart. As he was still stabilising more with fluids and glucose they wanted to wait a day or so for his surgery to ensure the best chance of success and him coming out of it well.

He went in for his surgery in the early afternoon on the 28th of December and everything went incredibly successfully with the repair, it would just be a waiting game while we made sure he would wake up well by himself and to see how he would react to breathing for himself after being ventilated for a few days. Once again the nurses especially were fantastic at reassuring us and keeping us informed, while every doctor and specialist we saw was patient with us, explaining things several times when we were too in shock to take anything in the first time!

I can’t voice enough how lucky we were to be looked after by such an amazing, kind, caring and professional team of doctors, nurses, cardiac specialist/consultants, breast feeding support staff, the brompton fountain and family liaison officers, who not only saved our baby’s life, but reassured us as terrified, first time parents that he was in the best possible hands. The support we received allowed me to also 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 him being and he is back on track for his development, despite the fact that at 16 days old he had spent 7 days in intensive care, 5 of which he was only having a ventilator and IV fluids keeping him alive.
Thank you Royal Brompton Hospital.














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