Life With Half A Heart During Coronavirus – Jack’s Story

“Jack was born in the early hours of 6th May 2006 weighing 5lb, 11ozs. He was small considering he arrived on his due date but was perfect to us in every way. They weren’t concerned over his weight, however, his blood sugar level was low so he was taken to the SCBU (special care baby unit). 

Over the next few days we tried to get Jack to take his bottles but he just didn’t seem interested and much preferred sleeping. Eventually, after 5 days he started to take his milk much to everyone’s relief, finally we could take our little bundle of joy home. Everything was good for the next couple of days and we were looking forward to registering his birth but first had to take him back to the hospital for a routine appointment (common practice after spending time in SCBU).

The doctor checked him over and said “I’m sure everything is fine” but that comment didn’t sit right with us, we don’t normally question things but we just didn’t feel right so asked for a second opinion. Another doctor arrived and took Jack’s sats. We had no idea what this meant but it checks the oxygen saturation levels. In most this would be 97-100%…….Jack’s reading was 56%! All hell broke loose, 7 doctors in the room and we were told we needed to go to the wonderful Freeman Hospital. Fast forward a long few hours and lots of tests later and we had our diagnosis.

We were told our only child, Jack, had been born with a congenital heart defect called Pulmonary Atresia with a Ventricular Septal Defect. In short, one of the main pumping valves, which pumps blood from the heart to the lungs didn’t form. He also had a large hole in the bottom chambers of his heart. Jack was now 10 days old. We were told if it had gone undetected for another 24 hours he won’t be with us.

We were at first in shock then devastated as reality hit home. The consultant said his only chance was open heart surgery, however, he was too poorly and the chances of survival were slim so they had to stabilise him first. 48 hours later Jack was prepared for theatre and if it hadn’t been for the fantastic team at the Freeman he might not have been here today. He had his first open heart surgery at 12 days old and has had several operations since then with has last being in February this year. Jack was nasal gastric (ng tube) fed until he was 3 years old and didn’t walk until then too.In September 2017 Jack started High School. A huge milestone for him but within weeks of starting he was taken to hospital with chest pains. At first we thought growing pains however after tests it showed he needed his next valve replacement.

January 2018 he underwent a donor value replacement. The op went well however Jack was then diagnosed with severe right pulmonary hypertension. All seemed to settle then Jack had his usual cardio appointment at the end of February this year and well it wasn’t the news we were expecting. After the routine checks when went in to see the consultant who went on to ask how Jack was, to which we replied “yeah, he’s great, no problems at all” to then being told well unfortunately we’ve found something on his echo which is very concerning.

He then went on to say we need an urgent CT scan as he thought he knew what it was but he’d never seen it in a child before so wanted the scan to confirm. There was still no mention at this point as to what could have been found. We went straight to CT.  He was immediately admitted to hospital after the scan in quite a serious condition. The scan confirmed Jack had a Pseudoaneurysm and he would be operated on as an urgent case as they fear it may rupture. The consultant told us to thank our lovely cardiac physiologist as she found what he said “was a very, very hard thing to find on an echo”. So within a few hours of this devastating news Jack was back in theatre to remove the Pseudoaneurysm and to have another donor valve fitted. We asked if there would have been any symptoms. No was the reply, he would have just deteriorated very quickly, someone was definitely looking after Jack that day.

We are just thankful it happened when it did as we now find ourselves in unprecedented times due to Covid-19 and to protect patients telephone consultations are now taking place. Had we have had that as our appointment we would have said “aww yes, Jack is fine, well in himself, there doesn’t appear to be any problems at the moment”…….how wrong we would have been.Although Jack has gone through so much in his life with many procedures and appointments to contend with, he always has a smile on his face and will always have a go at things that doctors thought may have been impossible for him.Despite a difficult start in life Jack has shown you can make the most of your situation and tries to lead as normal a life as he can. Jack loves all sports although his participation is obviously limited.#

I think the hardest thing about the current situation for Jack is being separated from his friends. Having undergone his last open heart surgery at the end of February he only managed to see a couple of his friends whilst in hospital and had arranged to see them when he came home however the Coronavirus then hit. Thankfully we have the technology to communicate but it’s not the same as seeing people and having that human contact. 

Jack was already classed as high risk but after the operation we became paranoid about touching Jack, I mean his Dad was still working with the general public until lockdown and I was going for essential food shopping. We couldn’t get antibacterial gel, masks or gloves at first but then our kindly friends and neighbours came up with the goods. We would watch on whilst Jack cared for his wounds.

So Jack is now entering his 9th week in isolation only leaving the house for the hospital appointments. Again, this was a surreal experience as the hospitals and their systems are so different at the moment so they can keep staff and patients as safe as possible. Jack was a little apprehensive about going in at first as he’s probably heard and read more than most about the current situation. He is worried about what’s happening everywhere in the world today but like everything Jack has been through before he will overcome and come out a stronger, more determined young man.”

Thank you so much to Jack’s mum Nicola for sharing this incredible journey with us. 

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