Revisiting Omar’s story

28/09/2022

As part of #WorldHeartDay, we're sharing an update on Omar, who has Shone’s Complex which is a rare congenital heart disease. After arriving at Great Ormond Street Hospital (GOSH) in 2018, Omar underwent a complex procedure which helped to save his life.

Omar was born prematurely at just 30 weeks with growth restriction and low birthweight. With Omar needing specialist treatment, he was transferred to GOSH, which treats over 1,500 children from the Middle East every year for rare and complex conditions.

 

At GOSH, Omar was under the care of Dr Robert Yates, Consultant and Honorary Lecturer in Paediatric and Fetal Cardiology at GOSH. Omar arrived at GOSH only weighing 3.2kg and had complications including chronic lung disease, pulmonary hypertension and retinopathy of prematurity (ROP).

 

Omar had an initial heart operation soon after he arrived at the hospital but within 8 weeks of Omar’s arrival in UK a further cardiac operation was needed to address poor clinical progress and recurrent mitral valve stenosis- a narrowing of the heart’s mitral valve.

 

Return to GOSH

 

Omar at Gosh with his nurses

 

Four years after arriving at GOSH in 2018, Omar and his family recently returned to GOSH for another procedure and check-up with Dr Yates.

 

“It was a pleasure to have Omar come back to the United Kingdom and to Great Ormond Street hospital for further cardiac treatment.” said Dr Yates.

 

“His Melody valve in the mitral position was in place for a little bit more than 5 years. As far as I can establish, this is the longest time that a Melody valve inserted in early infancy into the mitral position has lasted in a child anywhere in the world. It was challenging to remove this valve and implant a mechanical valve in its place; however, this was well tolerated and the end result has been very satisfactory and reassuring.”

 

“It is extraordinarily rewarding to see the progress that he has made and given how small and frail he was when he first arrived here in UK. Many of the staff who remembered him from that time were amazed at his progress. A great credit to all who have been involved and particularly to his parents.”

 

Omar today

 

Omar in the Park

 

We caught up with Omar’s mother to get an update on Omar and his family and to find out more about their visit back to the UK and GOSH.

 

What is the latest on Omar’s health condition?

 

Omar is doing well and has made good progress in general since the last time we were here in the UK in 2018.

 

He no longer needs to use the gastrostomy for eating and is able to eat orally without any restrictions. He doesn’t like drinking from a cup, so he uses a straw bottle to have more control while drinking.

 

Omar loves eating his salads, fruits and a good amount of protein and carbs in general.

 

He's not very fond of candy and sweets, instead he loves biscuits and crisps.

 

Cognitively, he was able to learn a lot since he was homeschooled during the pandemic. Daily physical activities are his favourite, like cycling around, playing on scooters and running at a nearby park. It was challenging; however, we were able to catch up with his delayed development.

 

How is his current treatment going?

 

We returned to the UK because Omar was due for his heart surgical procedure. It was done previously in April 2022. Omar’s cardiac team managed to replace his old Bovine Melody valve with a mechanical valve. We are so thankful that Omar's cardiac surgical team did an excellent job because it was a complex surgical procedure.

 

My husband and I trust the surgical team who also did Omar’s previous surgeries. The excellent cardiac doctors and surgical team are proven to be the best asset to Great Ormond Street Hospital.

 

How often does Omar go to GOSH for check-ups?

 

This is our fourth time here in the UK. Local and foreign doctors primarily decide on when Omar needs to be back in the UK and it usually depends on if his heart requires treatment.

 

Dr. Robert Yates, Omar's lead cardiac doctor from GOSH usually visits quarterly to Dubai to see his patients, like Omar, for their regular checkups.

 

How old is Omar now?

 

Omar just turned 6 years old. He celebrated with a Jubilee holiday across the UK.

 

What is Omar’s everyday life like?

 

Omar’s day to day activities back home are really good. He has tasks to do at home like daily light chores, including cleaning the house and helping me with some domestic chores like vacuuming (Omar’s favourite activity), cleaning up his toys, organising his books, helping set the table, and sometimes folding some of his clothes too.

 

He loves playing in the park and scootering around.

 

Omar is also my shopping buddy since he was little and I take him with me to malls and supermarkets. Additionally, Omar  has enrolled in school this year.

 

Omar at the Sherlock Holmes exhibition

 

Learn more about Omar’s pioneering heart surgery which saved Omar's life 

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