When Rocco was born, he appeared to be perfectly healthy. When his parents noticed his breathing seemed fast, he was thankfully referred straight to hospital where his heart defects were diagnosed. However, had he had a pulse oximetry test after birth, his condition may have been detected sooner. His mum, Jayne, says she knows how lucky they are to still have him . This is their story.
On the 3rd August 2020 I went for my 20 week scan. We’d had a private gender scan at 16 weeks and found out the baby was a girl, so imagine the surprise when we found out the little girl was actually a little BOY! We were thrilled either way and just grateful our little miracle was healthy and doing well as our journey to parenthood had not been easy. Little did we know the biggest surprise was yet to come.
Rocco was born on 28th December. I had the most amazing, uncomplicated birth and we were home a mere few hours afterwards. His day three and five midwife checks were all good and we were enjoying the newborn bubble as a new family of four. Ruby was smitten with her little brother.
At seven days old I asked my husband, Paul, “Am I being paranoid or is his breathing a bit weird?” Paul said he had thought the same. Of course we turned to Google for what a normal breathing rate is – 40-60 breaths per minute. Rocco’s was over 90. Other than his breathing, he had no other obvious symptoms. He was doing all the normal things newborn babies should do – his temperature was normal, he was feeding, producing wet nappies.
We called 111 and an amazing out of hours GP called us back and got us in at the local hospital children’s assessment unit just to be on the safe side. It now haunts me that I was so blasé about taking him. I honestly thought we would be in and out , we’d be wasting their time and they’d send us back home.
We were looked after by a great team at the hospital. Rocco had lots of tests, all of which were coming back clear. They suspected bronchiolitis or a viral infection. However the next morning, they performed an echocardiogram where they diagnosed coarctation of the aorta, VSD (hole in the heart) and BAV (bicuspid aortic valve).
At that moment everything changed. So many people were in the room, he was put on medication to reopen his duct and to allow blood flow. Rocco was collected by the intensive care retrieval team and taken to Southampton where he would have open heart surgery in the next few days.
It didn’t feel real. He was so tiny and perfect, how could he be so critically ill? Due to Covid restrictions, I had been on my own the whole time up until that point. It was an extremely emotional time seeing my baby being poked and prodded, his veins were so small they struggled to cannulate him and had to go in a vein in his head, but despite it all, I felt supported by the wonderful staff.
At nine days old Rocco had surgery, which went well. I will never forget the journey down to theatre and kissing him before he went in, having to leave him, knowing that it was the hardest thing but the only way to save his life. He spent three days in PICU and recovered well. The team were incredible but it was such a scary time, seeing your baby intubated and hooked up to so many machines, covered in wires. We spent another week back up at the ward where Rocco got stronger every day.
The surgery had been a success and we can never thank the NHS enough for all they did for him. We are so aware of how very lucky we are his condition was found when it was and could be treated. I’m committed to raising awareness of undiagnosed heart conditions with Tiny Tickers, as I honestly had no idea until I was faced with one. If Rocco had been offered a pulse oximetry test after birth it may have shown something was wrong and his condition could have been detected earlier.
Rocco will continue to have regular check-ups at hospital. He’s now a thriving, cheeky seven month old and we are beyond lucky to have him.