6 minute read
Jack’s CHD Journey
One mother recounts the long and painful journey after being told her son has 2 holes in his heart.
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 what felt like an eternity, Jack who immediately listened to Jack’s was stabilised and was flown over chest and said he would need us to to the UK in an air ambulance. go straight to the Children’s Ward Upon arrival onto the heart ward, at our local hospital. At this point I Jack was placed in the Intensive knew nothing Care section whatsoever of the ward about Congenital "I’d notice he with aroundthe-clock Heart Disease. was becoming monitoring. After several tests on breathless with most feeds." After a few days passed, Jack responded well the ward I to the heart remember very medication and clearly the room full with doctors, being permanently fed high-calorie and that’s when our lives changed feeds through an NG Tube, as it forever. “Your child has 2 holes in was too tiring on him to feed him his heart (an ASD and VSD) and is orally. in heart failure!” Jack was hooked up to numerous monitors, cannulas We spent approximately 3 weeks and a feeding tube inserted. The in the UK before being flown plan was to fly Jack over to a UK back home. From then on Jack Children’s Hospital asap for further spent most of his early years in treatment/possible open-heart hospital. Our new normal. As the surgery. The next coming days years went on Jack suffered with were challenging as Jack had repeated chest infections which deteriorated significantly and was initially put down to him became too sick to travel. After 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.
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 followup 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.
To watch the video Jack is featured in, visit: youtu.be/ECfifR9lpyM and to donate, visit: uk.virginmoneygiving. com/IAm1in100withCHD.
