Eddie’s Story

Our son Edward, was born on 26th October 2017 in Bristol.

I had an induction at 38 weeks due to us finding out at the anomaly scan that Eddie had Pulmonary Atresia with Intact Ventricular Septum. He was born weighing a huge 9lbs 1oz so weight was definitely on his side!

When Eddie was born, and after a quick cuddle, he was taken off to newborn intensive care unit – NICU where they confirmed his condition. At 2 days old he had a catheter procedure to dilate his pulmonary valve. This failed and so 3 weeks later he had the procedure repeated. At 4 weeks old we were finally able to take Eddie home as his sats were stable and he seemed to be doing well.

Life at home with a new baby is stressful, but it was even more stressful with his cardiac condition. I constantly checked if he was breathing and he always seemed to be unsettled and wouldn’t take a bottle very well. We put this down to colic, reflux and just minor things all babies have.

Two weeks later we went to a routine appointment at Cardiff UHW, where the cardiac consultant felt he should admit Eddie overnight just to ‘keep an eye’ as he felt his sats were a bit low. We still to this day thank our lucky starts he did, as that night his saturations dropped to 30 as his pulmonary valve ceased shut. He was taken to intensive care and put on a ventilator where it was decided he needed open heart surgery to put a shunt in to save his life. Our nearest hospital to perform the surgery is Bristol, but all the beds were full so it was decided Eddie had to go to Southampton. We did not hesitate in going with him. I remember all the staff at Cardiff being fantastic and they kept telling us that we weren’t alone and they’d be with us every step of the way. They weren’t wrong.

The next day in Southampton, Eddie had open heart surgery to place a BT shunt in. The surgery went great and we went in to see him. He looked healthy and I was glad it was over, but an hour later he began to crash and a swarm of doctors came to him. They had to open his chest to relieve the pressure as his blood pressure dropped really low. I will never forget walking in to find him with his chest open. I will also never forget the dedicated staff at Southampton who saved his life and went above and beyond for both Eddie and us.

We were only in Southampton for 6 days when we were transferred back to Cardiff. It was 20th December and they wanted to get us back to Cardiff for Christmas. Eddie spent his first Christmas in hospital on Pelican Ward, but the staff were fantastic and also involved Eddie’s older sister Evie in everything. Eddie even gave us his first ever smiles! Not long after Christmas we were allowed to go home, as soon as we had all the training on his medications and feeding tube. However the day before he was due to go home he took a turn and I felt something wasn’t right. His heart rate was also in the 200’s.

Doctors agreed he was brewing some kind of infection and agreed to keep him in for one more night. The next morning Eddie became so ill that they didn’t have time to get an IV in so they had to use an IO (needle that injects medications straight into the bone) he was taken up to intensive care where I watched him go blue before my eyes. He was put on a ventilator and we were later told he had influenza A (swine flu) he was in intensive care for 4 days and then went back to the ward but it was like he couldn’t recover from it.

In the weeks that followed Eddie was really mottled all the time and very irritated as if he was in pain. We couldn’t work out why until one of the nurses noticed one leg was more swollen than the other. Tests later showed he had a blood clot in his leg so he was taken to intensive care to have a TPA infusion. This was to try and break down the clot as quick as possible. Eddie was still the same afterwards and more tests revealed that the blood clot had spread to his kidney, blocking the artery and cutting off the kidneys full function, causing pain for Eddie and causing his blood pressure to be dangerously high. Further tests revealed that Eddie actually had a narrowed artery to his kidney which he’d had from birth, but we wouldn’t have known about it if it wasn’t for the blood clot.

Eddie needed an angioplasty on his kidney to open up the artery in order for it to regain its function. The only center to perform angioplasties on children was Great Ormond Street, so this was our next step and in February 2018 we spent 2 weeks there with Eddie, where he had his angioplasty and luckily regained full function back in his kidney. We spent a week back in Cardiff on pelican ward and then after 11 long weeks in hospital we were finally allowed home.

During the 11 weeks in hospital we were lucky enough to be given help by the The Leon Heart fund, and we honestly could not have afforded to be in hospital with Eddie if it wasn’t for the help provided.

Eddie is now coming up to 2 years old and is a happy, sometimes naughty and cheeky little boy. He recently had his second round of open heart surgery where he had a transanular patch on his pulmonary valve as a more permanent way of allowing his valve to work normally. He has thrived since then.

We will never forget any of the amazing staff at all the hospitals involved in Eddie’s care. They have all been absolutely fantastic and hold a very special place in our hearts.

Best wishes, Steph (Eddie’s Mum)