Parents' heartbreak as baby 'born sleeping' due to 'one in 4,000 condition'

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Teddy a heart defect called "hypoplastic left heart"

A couple have been left heartbroken after their baby baby was 'born sleeping' due to a rare defect during pregnancy. Charlene Parsons and Louise Chapman, who are both officers for Sussex Police, had been expecting Teddy in August 2023 but after a routine scan at Worthing Hospital their "world was turned upside down".

The couple, both aged 35, were told their baby had a hole in his heart. They explained: “We were referred to Southampton Children’s Hospital for a second opinion and, on April 19, we were told our baby boy had a heart defect called hypoplastic left heart – something we had never heard of before,” the couple wrote on their GoFundMe page.

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“We were taken to a room with numerous doctors, nurses, heart surgeons and midwifes, which was worrying in itself with 12 strangers looking at you.

“We were told that hypoplastic left heart is a defect that can occur in one in 4,000 babies and unfortunately there is no cure but only operations that could prolong someone’s life.”

Charlene and Louise were given three options. They could either carry on with the pregnancy and allow Teddy to have open heart surgery, have palliative care at home, or choose for the pregnancy to end ‘and our son to be born into this world early’.

Charlene and Louise's daughter DarcieCharlene and Louise's daughter Darcie
Charlene and Louise's daughter Darcie

“Making that decision and knowing what was the right thing to do was extremely difficult and heart-breaking,” Charlene said.

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“We could have had the choice to have Teddy until he was three/four years old but we didn't think it was the right thing to do. He would have been very poorly.”

Teddy – who was being carried by Louise after IUI treatment – was born sleeping at 22-weeks old on 25 April.

“We have hundreds of photos of him because the Worthing Hospital staff were fantastic,” Charlene said.

“They let us make as many memories as we possibly could with him – including taking handprints and footprints. I’ve got his footprint tattooed on my arm. I can't fault Worthing Hospital, they were brilliant.”

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Teddy was also blessed by the hospital chaplain and, on 15 May, had a ‘beautiful service’ at Worthing Crematorium.

“Lou and I and our families could send Teddy off on his next adventure,” Charlene said. “Teddy will always be our son and a part of our family.” The couple from Worthing added: “Darcie (their daughter) was super excited knowing she was going to be a big sister and have a little brother to boss around but sadly our excitement soon ended and our world was turned upside down.”

Charlene said she and Louise had received ‘so much support’ from family, friends and police colleagues, for which they would ‘always be forever grateful’.

She added: “If it wasn't for them, I don't know how we would have got through it. It was the worst experience of our life. We've never known anyone to have this defect ever. It was a massive shock.

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“We didn't want people to shy away when we returned to work. We wanted people to talk about Teddy. He's our son and we want people to know we do have a son and Darcie has a younger brother. Everyone has been really supportive.”

The couple are now ‘asking for a little bit more’, with Charlene planning to run the Brighton half marathon on February 25.

“I hate running and can’t sleep for two weeks leading up to the annual bleep test for work,” she said. “We chase people every day and I don’t mind doing that but I don’t like running whatsoever. So this has been challenging mentally and physically.

“I’m running for Teddy and to raise money for the British Heart Foundation to support them in ongoing research into heart conditions that can help save lives and maybe one day have an answer for hypoplastic left heart so others could have a healthy long, happy life. Ideally, we want to raise as much as we can for them. Hopefully, one day, this won’t happen again.”

Click here if you would like to make a donation.

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Charlene said it had been a challenge to find time to train for the half marathon with commitments at work and as a mum.

“I did nine miles in minus-one conditions,” she said. “It was freezing. I wouldn't say I’m confident but I know I’ll definitely do it. I’ll get it done. I’m trying to get a few runs in a week and it's going good.”

Charlene also revealed that the ordeal had not deterred her and Louise from trying for another baby.

“It's not the end of our journey,” she said. “We will hopefully try again eventually and haven’t been put off. We want this year to be a positive year. We are positive now to see what our future brings us.”