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12th Jun 2020
When Raees Hassan was born in March this year, mum Farah had no reason to think that her new baby was anything but a healthy boy.
But at only 6 weeks old little Raees presented at the Royal Oldham Hospital with chest recession. This is when the baby’s ribs and centre of the chest is pulled in; an indication that the baby is finding breathing difficult. Immediately doctors in Oldham scanned his heart and referred Raees to Alder Hey Children’s Hospital, a centre of excellence for congenital heart disease.
Raees was immediately scanned and diagnosed with Transposition of the Great Arteries (TGA) which meant that both his two main arteries in his heart were in the wrong way around. His aorta was connected to the right ventricle when it should normally be connected to the left ventricle and the pulmonary artery was connected to the left ventricle when it should normally be connected to the right ventricle. This meant that oxygen-poor (blue) blood is sent to the body instead of to the lungs and oxygen-rich (red) blood returns to the lungs instead of going to the body.
Ultimately it meant the Raees’ oxygen levels were very low, he couldn’t breathe properly and his condition was life-threatening.
Mum Farah said: “I was completely shocked and numb when the doctors at Alder Hey told me he had TGA and with how ill he was. I had no idea that TGA even existed and so it was so unexpected. Our whole world was turned upside down.”
Raees had a rare and complicated case of TGA. Cardiac specialists at Alder Hey noted that they had hardly ever seen a case like this. Raees also presented to Alder Hey with this congenital heart malformation very late; as most babies would not survived this level of TGA without treatment which complicated matters further.
And to add more heartbreak to Raees’ family he was diagnosed with COVID-19, which is extremely rare in babies after being tested on his arrival at Alder Hey. The combination of a very complex heart malformation, with the heart function affected due to his late presentation and him been infected with COVID-19 made the Raees chances of surviving very remote.
In order for him to even survive that day, Alder Hey cardiologists urgently needed to perform a procedure called a septostomy. This where cardiologist interventionists create a small hole in the wall between the left and right atria of the heart to allow the blood mixing in his heart and improve the amount of oxygen circulating.
Babies have a small hole in their heart whilst in the womb but this closes after birth as the heart starts to function properly. As Raees’ heart was not allowing enough oxygenated blood, cardiologists needed to recreate this false hole just to keep him alive.
The procedure was a success, but because Raees now had COVID-19, the cardiac surgeons could not perform the complicated surgery needed for his TGA until he had stabilised and was strong enough for the ordeal. As his oxygen levels continue to be dangerously low, Raees was also put on ECMO; a heart lung bypass machine, to keep him alive until he improved from his COVID infection and had a chance to undergo his lifesaving operation.
Farah said: “It was a life or death situation. Even the doctors said the odds were against us and when a doctor says something like that to you, you have to be prepared for the worst. At this stage, we were just trying to keep him alive.
“And as he had COVID-19 we couldn’t even touch him without our gloves on, we were in full PPE when around him. It was such a difficult time.”
Nine long days into his stay at Alder Hey, brave Raees beat COVID-19 after a negative test result but his life was still dependent on the heart-lung machine. Raees’ only option to was to undergo a live-saving high risk operation to repair his complex heart malformation which was led and planned by the Chief Cardiac Surgeon at Alder Hey, Mr Rafael Guerrero.
Mr Guerrero said: “Baby Raees had one of the rarest forms of TGA which together with a severe damaged function of the heart and having COVID-19 infection make him an extremely rare and very sick and complex baby.
“Performing this highly complex operation to correct the heart malformation was the only chance for baby Raees to survive and for his family to have the opportunity to see their baby growing up.”
The operation was very high risk with a less than 50% chance of survival and in addition there was all the unknown risks related to a baby having an infection with COVID-19.
Farah said: “We had no choice really. If he doesn’t have this operation, he is going to die. If we do go through with it, at least he has got a chance. And that’s all we wanted.”
Raees’ operation was incredibly complicated and took over 6 hours to complete. Although the wait was like an eternity for mum Farah and dad Aqeel who were waiting for news throughout the day:
“We just prayed and prayed all day for a successful operation. It was such a daunting experience having to wait that long. Each second felt like 100 years.”
However the operation was a complete success and although he needed to regain his strength and recover from surgery he was over the worse.
Rafael said: “Our extraordinary team of doctors, nurses, cardiologists, anaesthetists, perfusionist, ward and theatre teams who worked together in carefully planning and delivering his treatment. I am very proud of every single member of the different specialities who have been instrumental on the success of saving Raees’ life.”
Raees spent a number of weeks at Alder Hey recovering, but five weeks after first being rushed to Alder Hey and two weeks after his life-saving operation he is now at home in Rochdale and getting to know his big brother, three year old Ayaan. Farah says she would like to thank everyone involved in helping to save Raees’ life.
Farah said: “I am so thankful for all the doctors, nurses; everyone at Alder Hey especially Mr Guerrero and the NHS. They have all been there all the way, even when I couldn’t be there. They have done such an amazing job. And we can’t thank them enough.
“Raees has been through so much and come out stronger for it, he is a real soldier. Doctors say there is no reason he can’t do anything he wants to. He can climb mountains, be a racer, whatever he wants. He has a life now.”
Alder Hey Children's Charity