Baby struck down by coronavirus-linked syndrome left with lifelong heart condition

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A baby has been left with a lifelong condition after suffering from a rare syndrome that affects children which is linked to coronavirus.

Leia Godwin was just five-months-old when she became one of the very few Paediatric Multisystem Inflammatory Syndrome (PIMS) cases in the UK.

The tot was hospitalised in April after running a high temperature accompanied by a slight rash.

Leia's mum Hannah Godwin – who is also mum to Nia, 13 and Gracie, nine, as well as Leia's twin Thea – thought little of the rash and suspected it was an allergic reaction but called 111 just to be safe, Wales Online reports.

She was advised to take her daughter to the Royal Gwent Hospital in Newport where Leia was put straight onto antibiotics for suspected sepsis or meningitis.

Leia Godwin was just five-months-old
(Image: WalesOnline/Rob Browne)

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But after a day in hospital Leia's condition deteriorated as the rash covered her whole body, her high temperature remained, and she had developed a chesty cough, tonsillitis, and tachycardia so she was moved onto the high-dependency unit.

Leia was then moved to the Noah's Ark Hospital in Cardiff where she was eventually diagnosed with PIMS which is also likened to Kawasaki disease.

At that time it had recently come to light as a side effect of the virus in children.

Leia spent four weeks in hospital but now, six months on, is doing really well and is hitting all the same milestones as twin Thea as they approach their first birthday.

Leia with her twin Thea
(Image: WalesOnline/Rob Browne)

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Hannah, 36, from Risca in Gwent, said: "You would not think there is anything wrong with her. She is doing really well."

However during her stay in hospital in April and May it was discovered that Leia has multiple aneurysms in her heart – an abnormal swelling in the artery wall of the heart which could possibly cause a heart attack or heart disease.

Due to existing heart conditions in the family both Thea and Leia were scanned as newborns.

Thea was found to have a hole in her heart but Leia's appeared healthy.

Leia developed a rash all over her bdy
(Image: Hannah Godwin)

Because of this doctors could identify the heart aneurysm as being a result of PIMS.

"She will be on blood thinners for the rest of her life," explained Hannah.

"Because of the heart aneurysm she's got to make sure her blood is not clotting.

"They appear to be stable now. They should not grow – any growth would be horrendous. The only risk factor is any stress that can put stress or pressure on her heart."

Leia was initially treated for suspected sepsis or meningitis
(Image: Hannah Godwin)

Hannah said that Leia may need surgical intervention in the future, which could include a heart transplant but she is hopeful that won't be required.

While Hannah said Leia's consultant does not seem too worried about the heart aneurysm, as with any parent in the same situation her anxiety around Leia's health is heightened.

"It was a horrendously scary time and I haven't felt that with any of my other babies. But we are a little bit more soft with her," Hannah continued.

"It is a little bit strange getting used to it. You know when your child falls over you are sort of like: 'Get up, it's okay' but with Leia I worry."

Leia with mum Hannah Godwin in hospital
(Image: Hannah Godwin)

Leia was recently admitted to hospital twice as a precaution – once after her eyes became bloodshot and she broke out in small spots and on another occasion after bumping her head.

"You need the peace of mind. If I saw the exact same symptoms in Thea I probably wouldn't worry as much but after what Leia went through I do."

Leia now wears a helmet to protect her from any bumps and falls that could trigger a stressful reaction in her heart.

One of the mysteries still facing the family is how Leia contracted coronavirus in the first place.

Nia, Hannah, Leia, Simon, Thea and Gracie Godwin
(Image: WalesOnline/Rob Browne)

Leia's dad Simon Godwin, Hannah's husband, has a heart condition which meant the family had been isolating long before Leia fell ill.

Antibody tests later conducted on Thea and Hannah found neither were carrying any coronavirus antibodies.

However the same test on Leia showed she had the virus so it's thought that while Leia had it at some point neither Thea nor Hannah did.

"There are a couple of hundred kids that have been affected by PIMs like Leia and, from some parents that I spoke to, she hasn't got off lightly.

Leia with dad Simon
(Image: WalesOnline/Rob Browne)

"Out of the families I have been in contact with some of them have come out of it relatively unscathed," said Hannah. Sadly in May an eight-month-old baby died after contracting the same syndrome.

Looking towards the future Leia should have a normal life but Hannah explained there is a possibility she will need further treatment in the future, such as a stent or, in the worst-case scenario, a full transplant.

Now Hannah is hoping to raise more awareness of PIMS and Kawasaki disease, as well as heart conditions in children, as she believes there is so much parents do not know about the both.

"A parent is worried about meningitis and sepsis – we know the pin prick test – but there is so much we don't know about.

"I would never in a million years have thought of Kawasaki disease."

Hannah has now set up a website called Babies' and Children's Hearts in Wales (BACHIW) to raise awareness of Kawasaki disease and PIMS and is also raising money for equipment for paediatric cardiology in Noah's Ark Hospital.

She explained the hospital are interested in purchasing equipment that would allow parents of child patients to monitor their hearts from home.

To make a donation click here.

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