A toddler has been identified as the only person globally to be diagnosed with an extremely rare disease, which was detected during her mother’s 36-week pregnancy scan. Stacie Hammond, 45, attended her 36-week scan where doctors noticed a ‘dark patch’ near her baby’s heart.
The baby’s lungs had collapsed and were filled with fluid, causing her heart to shift across her chest. Little Harleigh Tidd, now three, was born days later against all odds, with just a 13% chance of survival.
However, shortly after returning home, Harleigh fell ill and it was discovered that her lung had collapsed and filled with fluid again, mirroring the condition in the womb. Doctors were unable to identify what was causing her lungs to fill with fluid and she has undergone 38 operations since December 2024.
Doctors concluded that Harleigh had lymphangioleiomyomatosis and chylothorax and skeletal dysplasia, making her the only known person in the world with this diagnosis. The rare condition causes her lymphatic system to leak a fluid called chyle into her lungs uncontrollably.
Doctors have stated that there is nothing more they can do for her. Harleigh has now been fitted with her final chest drain, indicating she only has a few months left to live, reports Chronicle Live.
Stacie, who is a full-time carer for Harleigh from Gateshead, Tyne and Wear, said: “When Harleigh was born, she was classed as a miracle baby because she survived. But we noticed Harleigh developing rashes and becoming ill and eventually we took her to A&E.
“It turned out that Harleigh’s lungs had collapsed and filled with fluid and every time they were drained they would fill again. This year we found out it was getting more aggressive.
“Harleigh’s dad and I were told that we had come to the end of the road with her treatment. It’s heartbreaking – of her three years, she’s only spent about seven months out of hospital. As a parent all you want to do is protect your children, but this isn’t something we can protect her from.”
In August 2022, Stacie, who has three grown-up children, attended her scan appointment with partner Stephen Tidd, 28. The pair watched in alarm as medics were summoned into the room to examine the scan on the screen.
Their unborn child had a collapsed lung, which had become flooded with fluid and forced her heart to the other side of her chest. She underwent an emergency delivery four days afterwards, but survived despite slim odds and the threat of cerebral palsy, brain damage and Down’s syndrome.
Immediately after birth she was equipped with a chest drain to extract the fluid and provided with a breathing apparatus. Medical staff discharged her and Harleigh appeared healthy during the initial weeks.
Stacie said: “Harleigh stopped eating and taking milk and then her poo turned black.” She was rushed to A&E, where a chest X-ray revealed her lungs had become filled with fluid once more.
Harleigh was repeatedly admitted to and discharged from hospital over the following two years, including one admission lasting eight-and-a-half months. Stacie said: “They tested her blood and the fluid to try and work out where it came from and why her lung kept collapsing.”
She was discharged in August 2024, but soon fell ill again. In December 2024, Harleigh was admitted to hospital after the fluid overflowed into her chest cavity and her heart, requiring emergency surgery. Since then, Harleigh has had 38 operations as well as endless chest drains in an attempt to stabilise her and stop the fluid.
It was eventually revealed that the fluid was a lymphatic substance called chyle, which was uncontrollably leaking into her lung.
Stacie said: “In September we were called into a meeting to discuss the situation. This was the day our lives were torn apart – Harleigh’s condition had now made its way to her bowel, stomach and spleen and was spreading. There was no cure and nothing that could be done, they said. This was the moment we realised our beautiful baby girl was going to die – our lives were totally shattered.”
Harleigh was fitted with one final chest drain in late October, which the family have been advised may last around 10 weeks before becoming ineffective. After then, Harleigh will have a matter of days to live.
The family is now getting support from a palliative care team after putting a Do Not Resuscitate (DNR) order in place.
The heartbroken parents are now fundraising to take her to Disneyland. Stacie expressed: “We want her to be able to go away and have an amazing time, with memories that will last a lifetime. We call her our little warrior princess – the disease has taken over her whole body, but she has never stopped smiling.
“We want to raise awareness so that one day maybe doctors can find a cause or explanation as to why she developed this illness. We will donate her organs after she is gone to help save others in the future – she will make medical history.”
