Harleigh in hospital (Image: Stacie Hammond/SWNS)
A toddler has been identified as the only person in the world diagnosed with an ultra-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 infant’s lungs had collapsed and were filled with fluid, causing her heart to be pushed 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 again and was filled with fluid, mirroring the condition in the womb. Doctors were at a loss to explain why her lungs were filling with fluid and she has since undergone 38 operations since December 2024.
Medical professionals determined that Harleigh was suffering from lymphangioleiomyomatosis and chylothorax and skeletal dysplasia, making her the only known case worldwide. The rare condition causes her lymphatic system to leak a fluid called chyle into her lungs uncontrollably.
Doctors have sadly 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.
Stacie Hammond and Stephen Tidd with daughter Harleigh (Image: Stacie Hammond/SWNS)
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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.”
Back in August 2022, Stacie, who already has three grown-up children, attended her scan appointment with partner Stephen Tidd, 28. The pair watched anxiously as medical staff were urgently summoned to examine the monitor.
Their unborn baby had suffered a collapsed lung, which had become saturated with fluid and forced her heart across to the other side of her chest. An emergency delivery took place just four days afterwards, and miraculously she survived despite slim odds and the threat of cerebral palsy, brain damage and Down’s syndrome.
Harleigh after she was born (Image: Stacie Hammond/SWNS)
Immediately after birth, she was fitted with a chest drain to extract the fluid and connected to a breathing apparatus. Medical staff discharged her and Harleigh appeared healthy during her 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 spent the following two years going in and out of hospital, including one continuous stay 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.”
Following her discharge in August 2024, she quickly became unwell once more. By December 2024, Harleigh required emergency surgery after fluid spilled into her chest cavity and heart.
The youngster has since undergone 38 operations alongside countless chest drains in a bid to stabilise her condition and halt the fluid buildup. Medical teams eventually identified the fluid as chyle, a lymphatic substance leaking uncontrollably into her lung.
Stacie explained: “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.”
The toddler has had 38 operations and will soon move on to end-of-life care (Image: Stacie Hammond/SWNS)
Doctors fitted Harleigh with a final chest drain in late October, which medics estimate may remain effective for approximately 10 weeks. Once it fails, the little girl will have just days remaining.
The devastated family is now receiving palliative care support after implementing a Do Not Resuscitate (DNR) order. Her heartbroken parents are currently raising funds to fulfil their daughter’s dream of visiting Disneyland.
Stacie said: “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.”
