By Joanne Salter
Jack’s heart journey began when he was just 3 weeks old. I knew there was something not quite right after already having a son previously – Jack’s big brother, Jamie. Although Jack was born a month early by emergency C-section there weren’t any signs of anything wrong – he was just a bit small. Once we had settled at home after spending a week in hospital, Jack was not feeding as he should. I’d notice he was becoming breathless with most feeds. I informed the Health Visitor who advised me to attend at our local doctors’ surgery, which I did.
Unfortunately, on that first visit, the doctor had said that it was probably just a viral infection and said to keep an eye on Jack. The Health Visitor called me to ask how we got on, and after I explained she then said she would return the next day and make another appointment with another doctor. We went back the next day and saw our family doctor who immediately listened to Jack’s chest and said he would need us to go straight to the Children’s Ward at our local hospital. At this point I knew nothing whatsoever about Congenital Heart Disease.
After several tests on the ward I remember very clearly the room full with doctors, and that’s when our lives changed forever. “Your child has 2 holes in his heart (an ASD and VSD) and is in heart failure!” Jack was hooked up to numerous monitors, cannulas and a feeding tube inserted. The plan was to fly Jack over to a UK Children’s Hospital asap for further treatment/possible open-heart surgery. The next coming days were challenging as Jack had deteriorated significantly and became too sick to travel. After what felt like an eternity, Jack was stabilised and was flown over to the UK in an air ambulance. Upon arrival onto the heart ward, Jack was placed in the Intensive Care section of the ward with around-the-clock monitoring. After a few days passed, Jack responded well to the heart medication and being permanently fed high-calorie feeds through an NG Tube, as it was too tiring on him to feed him orally.
“I’d notice he was becoming breathless with most feeds.”
We spent approximately 3 weeks in the UK before being flown back home. From then on Jack spent most of his early years in hospital. Our new normal. As the years went on Jack suffered with repeated chest infections which was initially put down to him having heart conditions and were quite common in cardiac babies. Jack spent a lot of his times on the ward on C-Pap Machines to help with his breathing; his lung had also partially collapsed on several occasions.
After numerous flights to and from the UK for further tests/treatments, Jack was then diagnosed with Bronchiolitis Obliterans, a lung condition which was caused by repeated chest infections/pneumonias. Jack was put onto very high and regular doses of steroids together with permanent antibiotics alongside his then regular heart medications. He also had to have numerous little operations including: lung biopsies, bowel interventions/biopsies as he was also suffering from celiac disease, removal of tonsils, and had a permanent feeding tube inserted into his stomach. Jack also went through numerous and gruelling lumbar punctures, numerous longlines inserted to be able to administer medication more quickly and efficiently and countless CT/MRI/Cardiac MRI’s.
It wasn’t until we moved to Gibraltar when Jack was 6 years old that the hospital admissions stopped, we think due to the climate etc. This significantly improved Jack’s general health and he was simply monitored by a visiting cardiologist to the GHA on a regular basis. We would also then travel to the Evelina for further scans/general check-ups.
Jack is a very keen footballer and loves it more than anything. This was fantastic to watch on a weekly basis, seeing him thrive and giving it his all, but around December 2017 Jack started to become lethargic with less and less energy – this was not nice to see as Jack is normally so active and generally loves/lives life to the fullest. Upon Jack having his regular heart scan in Gibraltar, the cardiologist noted Jack had a leak in his heart, so we were sent to the Evelina for further tests and possible surgery. This was then confirmed and Jack would need to have open heart surgery to fix the leak and also close his hole in the heart (VSD); the other hole in the heart (ASD) had since closed naturally.
“That’s when our lives changed forever.”
Unfortunately, Jack could not have the surgery straight away as after numerous lung tests we were told his lungs were not strong enough. Jack at this point was becoming breathless after walking for a few hundred metres and got to a point of not being able to leave the house. He was then put on very high doses of steroids over the course of 2 months to strengthen and prepare his lungs for open heart surgery. This in particular was very challenging both mentally and physically for Jack as the steroid doses were so high, and at the age of 15 affected him immensely.
Jack had his surgery in July of 2018 to close the hole in the heart and repair the leak. All went very well but he still has a very mild leak in his heart which may require further surgery in the future. After surgery Jack was advised the recovery time after surgery was at least 2 months. 5.5 weeks into his recovery he was already at the football pitch participating in light training with his teammates. He had missed it so much and was also keen to go out and watch his beloved Manchester City play (who had sent Jack prior to his surgery a signed shirt from his hero) play.
Since Jack’s operation he has been thriving – he was even picked to train with the senior team at his club, St. Josephs! His daily routine currently consists of football, the gym and then the beach. We feel very honoured to be a part of this fundraising campaign for the Evelina Cardiology Team and the Echo because they have saved Jack’s life. The support we received from entering the ward that day for Jack’s surgery to the minute we left and to also have the follow-up care we have received is truly exceptional. We can’t thank them enough for giving Jack his life back. He has always taken everything in his stride from day one, but without the care given to him he would not be where he is today.
Jack is not the only child from Gibraltar to have had surgery/be treated at the Evelina Cardiology Department. Dr Bell who frequently travels to Gibraltar for regular clinics which saves the children/parents having to travel to London so much for their scans etc. is a massive ease. This is not by any means a sympathy story but more of an achievement story as like Jack’s story and despite life’s struggles these heart heroes simply get on and deal with it, they are all true warriors.
Singer/songwriter Byron Gold together with the Stratford East Singers has produced the single “I Am Home” especially for these two great causes and all 77 families participating in this fundraiser, with all monies raised going to the Evelina Cardiology Department. This will help in the vital research/equipment needed into Congenital Heart Disease, which they are constantly working hard at, and ECHO which helps support families/teenagers with CHD through these difficult times and beyond.