Lily’s story “A world without heart break”

Lily’s story ❤️

Lily & her twin sister Grace popped into this world prematurely at 29 weeks.

Weighing just 2lb and 2lb 12oz

Both had a really tricky start but after a lot of amazing care from scbu they began to pick up.

It was discovered very early on that both girls had holes in their hearts but Lily’s was a lot more serious At 5 weeks old we were told that she had a congenital heart defect called Tetralogy of Fallot and she would need open heart surgery to correct this but she was too small at that point, we needed her to weigh 8lb. Wow what a battle, the girls stayed In scbu for 10 weeks and finally came home the weekend they were due to be born, weighing just 5lb and 4.5lb

Lily never got hungry, she never cried for food like a normal baby and was very very sleepy but we battled on with my expressed milk, and nasal feeds, which as small as she was she could hook that tube out of her nose in a flash

After a long 6 months she made it to 8lb so we were settled into Bristol children’s hospital for her first surgery.

The team were amazing and after an extremely long 6 hours she was through it, open heart surgery through her back to have a shunt fitted to allow more oxygen into her lungs, it was terrifying but after 3 weeks of infections and pneumonia we came home.

She stopped feeding again and we faced another battle to get her to grow big enough for the full repair.

Eventually at 16 months old she was ready to have the repair so off we went to Bristol again for another gruelling few weeks.

This time the surgery was through the front, it was a long procedure but again she battled on and after a few weeks came home to grow and thrive .

Lily had regular check ups, scans and tests and all seemed to be going fine with no more surgery needed until she became a teenager. Life moved on, both the girls developed well and started meeting all the usual milestones, Lily was about 6 months behind Grace but it didn’t matter as she was doing well.

At the age of 7 she began getting tired, struggled to walk up the stairs, wanted to sit in the shopping trolley and couldn’t really run around like an active 7 year old.

We then got the devastating news that she needed a pulmonary valve replacement as hers wasn’t developing as it should, another lot of open heart surgery was scheduled

We prepared ourselves yet again and after three cancellations we were back in Bristol.

This time it was far more traumatic and painful for her, she was terrified of everyone and everything, changing a cannula took hours, she refused to look at her wounds and just stopped eating from the trauma. Play therapy helped and 3 weeks later we were home again, her weight plummeted, we had a long road ahead of us again but thankfully things began to improve and she has gone from strength to strength, she is now a happy, healthy 17 year old, about to begin college with a dream of becoming a play therapist. Further surgery may be required in the future but we don’t dwell on that and she lives life to the fullest ❤️

To celebrate 10 years since her last surgery Lily has decided to raise money for The British Heart Foundation, without their fundraising the research and cures would not be possible.

so please support Lily by donating any amount.

Want to join me in making a difference? I'm raising money to benefit British Heart Foundation, and any donation will help make an impact. Thanks in advance for your contribution to this cause that means so much to me.

More information about British Heart Foundation: We're the nation's heart charity. We help save lives with information, patient care and pioneering research. With your support, we're beating heart disease for good.