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Updated 02 November 2018

British couple speaks out about heartbreak after losing twins to rare disease

A young couple have been left heartbroken after both their twin boys died from a rare condition that attacked them in the womb.

A young couple have been left heartbroken after both their twin boys died from a rare condition that attacked them in the womb.

Caroline Willis (26) and Lee Brightman (30) from Bedfordshire, England, have decided to speak out about their final moments with identical twins Leo and Tyler after they were born at 25 weeks old.

One of the twins, who the couple named Leo, had heart failure and was stillborn, while staff battled to save the other named Tyler, who died 18 days later on May 26

The babies were diagnosed with twin-to-twin transfusion syndrome (TTTS) – a life-threatening condition which causes an imbalance in blood supply between identical twins – just a week after Caroline first complained of crippling stomach pain.

The couple have since accused Stoke Mandeville Hospital of disregarding her symptoms of the condition, something they feel could have saved their babies.

To add further heartbreak the couple, who conceived their twins through IVF as Caroline has polycystic ovaries, are now not eligible for more free fertility treatment as their first round was successful despite losing their twins.

 “We walked out of the hospital with two memory boxes instead of carrying two car seats with our babies in,” Caroline said.

“I had a normal pregnancy until 24 weeks when I experienced unusual pains. I knew something wasn't right,” she explained.

She tried getting an appointment with Stoke Mandeville Hospital after the pain worsened, but was told everything was fine.

"I eventually took myself back as my pain became excruciating. We were then told the twins had TTTS after I had a scan shortly before the birth,” she recalls.

Caroline Willis and Lee Brightman

While it’s not clear what caused the conditions, the couple is now trying to raise awareness to help others look out for the symptoms.

Heartbroken dad Lee said, “I could see Leo hadn’t made it. I was trying to maintain my composure for Caroline. To see your son die in front of you is horrendous.

“He was so tiny. To see your little boy wearing a hat for a premature baby that was even too big for him was heartbreaking,” he added.

The twins weighed less than one kilogram when they were born at John Radcliffe Hospital in Oxford.

For the next 18 days Tyler fought for his life surrounded by doctors and nurses until his condition took a turn for the worst.

 “I told him that Mummy and Daddy understand if you can’t fight anymore. He didn’t look right at all and I just had this maternal instinct that something wasn’t right,” Caroline said.

 “We held him from 3am till 7am. My parents came in and said their goodbyes.”

She adds that they then asked the nurses to remove the ventilator and the baby’s heart carried on beating for an hour before it eventually stopped.

The couple left the hospital to return to their eerily quiet home where they said they shut themselves off from the world.

 “It was quiet, although we’d never had them here it was just lonely. I asked my brother to come and clear out everything baby related beforehand,” Lee said.

“We just shut ourselves away and cried,” he added.

Carolyn Morrice, chief nurse at Buckinghamshire Healthcare, responded: “The loss of a child is a profoundly sad time for all concerned, and we offer our sincere condolences to the couple and their family on the loss of their babies. The couple’s consultant has met with them to discuss the care provided.”

Source: Magazine Features

 
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