'Our lives changed forever when my little boy went in to have surgery'

In August this year, weeks before his eighth birthday, Harri awoke from his third open-heart surgery but this time something was different. Mum Jade Rees knew something wasn't right when her son woke from his surgery, and doctors later confirmed that her suspicions were correct and Harri had suffered a stroke.

Whilst 20 weeks pregnant with her first-born son, doctors had referred Jade, from Porthcawl, to the foetal medicine unit in Cardiff as they weren't able to get a good view of the baby's heart. Jade said she could tell that the doctors were worried about her unborn son and said: "We thought by the looks on the doctors faces that there was something going on."

Scans revealed that Harri would be born with a severe heart condition but when he arrived his diagnosis was more complex than they had imagined. Jade was told her baby had pulmonary stenosis, atresia, an aortopulmonary window and Tetralogy of Fallot which would mean he would need intricate care throughout his infancy.

At just six days old, Harri underwent his first open-heart surgery. This was the first of three, another a week before his second birthday and his last being in August, when things took a turn for the worse. For the latest health and Covid news, sign up to our newsletter here

Harri was taken to Bristol Children’s Hospital where he underwent surgery to replace his right ventricle-to-pulmonary artery to improve his blood flow and heart function. Whilst the procedure was successful, things took a frightening turn when Jade noticed Harri was not the same when he woke up and was unable to extubate himself.

She said: "Harri’s had multiple surgeries before and as the levels of sedation are reduced, it’s not uncommon for him for him to start extubating himself. But this time he didn’t and I could feel in my bones that something was wrong."

During the surgery Harri's heart sustained a slight tear causing him to have an acute ischemic stroke resulting in damage to his brain cells. He had lost the ability to talk, walk and couldn't move his left arm or right leg becoming someone his mum "didn't know."

Jade was scared that Harri would never be the same again. She said: "The first week when he was highly medicated I thought that he wouldn’t be able to talk again or be able to do anything ever again. That was extremely difficult, it’s scary."

Harri and Jade currently stay full-time at Noah's Ark Children's Hospital where he receives treatment as part of a rigorous 12-week neuro-rehabilitation program. Whilst he isn't able to do all the things he used to, Harri has improved tremendously and is 90% back to his normal-self according to Jade.

She said: "He is about 90% back to who he was before which in 15 weeks going from someone I didn’t know to the way he is now is amazing. He can roll, sit, take some steps and stand, is back to eating and talking, which a few weeks ago we didn’t think he’d be able to do any of that."

Mum Jade keeps Harri included in the conversions about his health with the doctors to help him understand what is going on. She says “It’s his body, his life. If something were to happen to me tomorrow I’d want Harri to know more about his health.”

As well as overcoming physical milestones during his recovery, Harri has battled with his emotions since having his stroke in August. Harri now has regular sessions with Bechan, a ward counsellor funded by the Noah’s Ark Charity, which has helped him learn to regulate his emotions and allowed him to communicate his feelings.

Since working with Bechan, Jade has seen a real change in Harri and she has helped him find his way back to himself. She said: "When we first got here it was a bit of a shock to both of us. I wasn’t sure how to come to terms with it, Harri wasn’t sure how to open up about what had happened either.

"Harri is very cheeky, very happy. Before his counselling he used to get tired and grouchy, lash out and throw things but now he understands that its ok to feel sad and tired."

It is unclear what the future looks like for Harri, as doctors think he may never be able to walk the same way again and will always need the support of a frame or wheelchair to help him. When running tests and CT scans on Harri's brain, doctors found that he had suffered a stroke before August which Jade only found about two weeks ago. It is unclear how the previous stroke will effect Harri and his recovery.

Harri, who is usually excited for Christmas and would have already helped with decorating the house by now, lives in hope that he will be able to spend Christmas day at home with his family. Jade shares the same hope sayingL "I don't want to spend Christmas in hospital."

Since Jade was first referred to Noah's Ark Children's Hospital in May 2016, she and Harri have been regular visitors benefiting form the services the hospital and charity provide both the children and parents. This made possible by the generosity of supporters that help the charity by donating, which you can do here.

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