"Miracle Millie" celebrates first year since rare heart operation

12-year-old Millie Healey has celebrated a year since becoming the first in the UK with her complex condition to have a rare heart procedure at Evelina London Children's Hospital.

"Miracle Millie", from Gloucester, was born with a rare combination of heart defects, the most challenging leaving her with less than half of her heart working, known as complex double inlet left ventricle.

After 3 open-heart surgeries before her first birthday, Millie's condition began to deteriorate when she was 8 years old, resulting in further life-saving and complex surgery. Thanks to the pioneering operation at Evelina London, Millie was able to walk across Westminster Bridge to Big Ben having previously been too weak to walk to the end of her hospital bed.

Millie's parents, Graeme and Kerry, said: "When Millie was born we knew she was really unwell with this rare combination of complex heart conditions, and underwent her first operation at just 10 days old at Birmingham Children's Hospital. She managed to make a good recovery after her third operation but we always knew she had a complex condition. Unfortunately, her health started to deteriorate when she was 8, and so was transferred to Evelina London Children's Hospital for specialist care."

After extensive tests and investigations, the specialist cardiology team at Evelina London recommended that she have a Fontan procedure, the final operation for children who are born with one half of their heart working. It links the veins directly to the lungs, leaving the single ventricle to focus on pumping blood around the body.

Already a complex procedure, this was further complicated as Millie only has one functioning lung and an unusual arrangement of blood vessels due to her other heart defects. To check the procedure was possible, the surgical team created 3D models of Millie's heart, thanks to Guy's & St Thomas' Charity funding a 3D printer.

In February 2023, Millie underwent a single lung Fontan procedure and the surgery, although very complex, was a success. Typically, most Fontan procedures last around 3 hours, compared to Millie's which took 6.

Graeme and Kerry said:

Having entered Evelina London being too weak to walk to the end of the bed, by the time she was discharged she had walked all the way from the hospital on the South Bank, across Westminster Bridge to Big Ben.

 

Now back at home, she is able to attend school full-time and leave the house without portable oxygen, which she hadn't managed since her heart started to fail 4 years ago. The operation was a miracle. She is now full of life and energy.

After several hospital admissions after the surgery last year, Millie has set her sights on her wish list and added "we're going to have some fun this year". Top of her wish list is going up Big Ben, which was a key target for her recovery while in the specialist children's hospital.

Millie's parents continued: "When Millie was recovering after her operation she would use Big Ben as a target to aim for in a series of steps. The first was getting outside to the gardens of neighbouring St Thomas' to view Big Ben, and then to get closer with every step."

Aaron Bell, consultant paediatric cardiologist and head of service, said: "This procedure was highly technical and rare – even more so for Millie with her serious condition and particular vein arrangement. She is only the fifth child in the UK to undergo the operation at Evelina London, and the first with her serious condition. However, without the surgery the only other option for her would have been a double heart and lungs transplant simultaneously. One year on and we're thrilled to see what a great recovery she has made."

Her parents continued: "Dr Bell, her surgeon Mr Austin and the whole team have been absolutely fantastic throughout, keeping us updated at every step, with some very honest, and admittedly sometimes difficult, conversations and decisions, always keeping Millie's health and wellbeing central to any decision making. The news of the operation was viewed with mixed emotions given the risks attached, but everyone involved in her journey was incredible. The hospital school was invaluable."

Simply put, there is no amount of gratitude that mere words are able to convey.

Evelina London, part of Guy's and St Thomas' NHS Foundation Trust, provides specialist cardiovascular and respiratory care at both our purpose-built children's hospital on the St Thomas' Hospital site and at Royal Brompton and Harefield hospitals.