On Universal Children's Day: A former patient with a rare heart condition thanks the consultants at Great Ormond Street Hospital for saving his life
“I was a little sick when I was born. I had lots of tests, but the doctors couldn’t find anything wrong, so they allowed me to go home. But then when I was four years old, I got a fever while on holiday in Mauritius that just wouldn’t go away. Worried, my parents arranged for me to see a local doctor who discovered I had a heart murmur.
“Our GP thought that something more serious was wrong, so I was referred to Great Ormond Street Hospital. After an MRI, ECHO and several other tests, the specialists discovered that I was born with two cusps, or flaps, inside the main artery in my heart, called the aorta, when I was supposed to have three. The valve inside this artery was also very narrow, so not enough blood was being pumped from my heart to the rest of my body. Though because I was so young, it was too risky to operate. If they tried to fix the abnormalities then, I’d just grow and need surgery again.
“I continued to have 3-month check-ups at GOSH, but then a year later when I was five, I started getting a lot worse. My parents noticed I was becoming a lot less energetic. My doctors decided that something needed to be done. Initially, they planned to replace my aortic valve with a new one by feeding a catheter, a small narrow tube, through a vein in my leg up to my heart. But the night before the procedure, they discovered small bumps made of calcium growing on my heart. They were making the artery very stiff and even more narrow. That’s when they decided to do open heart surgery.”
Yaseer’s mum Sherida says:
“In the months before Yaseer got very ill, we saw him struggle with basic things. He was much more sluggish and out of breath. He complained about feeling sick a lot of the time and that he wasn’t happy not being able to do the things every other little child could do. But even though we knew he was unwell, we were absolutely devastated when Yaseer was diagnosed.
“Arriving at GOSH was a surreal experience and when we were told that Yaseer would need surgery, we were in a state of shock. The fact we were told that our first child had a life-threatening heart condition and would need open heart surgery, not just once but potentially several times to keep him alive, was just too much.
“His first procedure was nine hours long, and every minute of it was horrible. But fortunately, the operation was successful and Yaseer bounced back very quickly. He was out of hospital within 4 days and back to school not long after.
“Over the next couple of months, we watched him get stronger, livelier and happier. We knew there was still a risk that the valve would loosen, and blood would start flowing back through his heart, but our son was stable for now. Everything had gone to plan, and we were told that Yaseer wouldn’t need surgery to replace his new valve for another 10-15 years.”
An unexpected turn
“But then last year, I collapsed. Once I got to GOSH, an ECHO revealed that the minor leaking in my valve had escalated to serious life-threatening leaking. My heart was failing. The other chambers in my heart had also started to weaken as well and it was affecting my lungs. I also had serious arrhythmias, or abnormal heart rhythms, which could have stopped my heart at any moment. I was dizzy, breathless, couldn’t sleep and had bad chest pain. Ultimately, my valve was about to give out and my consultants couldn’t be sure that it’d survive even a couple of months. I was scheduled in for an urgent aortic valve swap and other crucial procedures to fix my badly damaged heart.
“With all the discomfort, it was a really difficult time for me physically, but it affected me emotionally too. My specialists were amazing in how they spoke to me about everything. I was at all the appointments and they always talked to me first before speaking to my parents. I was involved in making decisions about my treatment and what was going to happen next. They cared about me as a person, and that made me feel like I wasn’t just a number on a list.”
Support at a difficult time
“The main urgent surgery I had was over 13 hours – much longer than planned. I was told later that is was one of the most life-threatening and complex cardiac operations performed at GOSH. My surgeons ran into trouble while operating and struggled to keep my heart beating. Once out of the theatre, I was immediately transferred to the Intensive Care Unit on Flamingo ward. I was put on a heart and lung ventilator and so had so many wires and tubes coming out of me. Once I was stable, I was moved to the High-dependency Unit on Bear ward. I was in a lot of pain because they had to break my breastbone during the operation. I now have a massive cut along the whole of my chest.
“Being in isolation is very lonely and boring because there are no other patients around. But the staff would visit, start discussions with me, and try to make it more fun. One memory I have is of Rebecca, who is a cardiac nurse, visiting at night when I couldn’t sleep because of the pain. I also slept through Eid day while I was in the ICU. But to make sure I didn’t miss out on any of the celebrations, the ward threw me an Eid party with presents and balloons. My family were also very supportive and came to visit when I was out of isolation.”
Sherida adds: “Having been with Yaseer every step of the way, I know how horrible and torturous last year’s surgery was for him. While his strong will and determination helped him cope, he could have only got through it with the support of everyone that looked after him as well. The care at GOSH was fantastic, from the caring nurses to the skilled surgeons who performed such a risky operation to save my son’s life. There were even physiotherapists who helped him recover. The emotional support they gave us was phenomenal and it helped me and my husband as well. We had an all-around amazing support network.
My ‘one of a kind’ heart
“Since my surgery, I been back to GOSH quite a few times for standard follow-ups. About four months after my operation, my consultants noticed that my heart was beating irregularly during an exercise test. I had a CT scan of my coronary arteries, which transport blood around the heart muscle, and they found abnormalities that they never noticed before. Then in July 2018, it was confirmed that my heart had multiple unusual abnormalities.
“The strange thing is, none of them was found to be getting in the way of my heart working properly. Several tests, including a cardiac catheterization to test how my heart was functioning, showed that my own heart has its own way of operating. It pumps blood differently than anyone else, but it’s enough for me to live a normal life. We thought I may have needed open-heart surgery again, which carries so much risk, so this was incredible.
“I now have very regular appointments at GOSH and will need to be closely monitored throughout my life. I have to take medication for heart failure, high blood pressure, asthma, and my lungs. It’s also likely that I’ll need more treatments and more surgery in future. But that’s just the reality of having a heart condition as a child. It’s random and there are no promises.”
Big improvements, big dreams
“For now, I’m focusing on my future.. I’d like to become a cardiac physiologist. They work in cardiac catheter labs, perform diagnostic testing for heart conditions, and work with equipment like ECHO machines. I’m really interested in anything to do with the heart. Everything I’ve been through has inspired me.
“I’m also much more active now. I used to cycle and play football before I became very unwell, but I had to stop because of my health. While I still can’t play football, I cycle 25 minutes to and from school every day. Other than that, I love going out with friends, to the cinema and to eat out.”
Sherida says: “After many months of recovery, my son is livelier, more upbeat and, most importantly, more himself. Yaseer is a very unique child. He's highly intelligent and always strives to reach the top. He’s absolutely loved by his classmates and teachers and always knows how to make people laugh. And because of the brilliant care and treatment, Yaseer received at GOSH, my son now has a shot at life. Without it, he wouldn’t be here considering his future. And for that, I seriously thank GOSH because, without them and God, we simply wouldn't have our son here today.”
To other families
“I want children going through similar experiences to know that they’re not alone. While you’re in the moment, it may seem like the worst thing in the world. But once you’re on the other side, you’ll realise why going through the surgery, tests and constant hospital stays were all worth it. The fact that I went from being really sick, so incredibly close to dying, to as normal as I can be is amazing. I want to be a source of support and inspiration for other kids. I want them to know they’re not alone.”