Amecia's story

When Amecia was born, she weighed just 1lb 7oz and was quickly diagnosed with chronic lung disease. But now, thanks to the hard work of the teams at Great Ormond Street Hospital (GOSH), Amecia is doing well, enjoying school and taking part in Bad Hair Day - enlisting the help of her classmates and teachers.

A rocky start

“Because she was born so premature, we always knew we would need to be really careful,” recalls Caroline, Amecia’s mum.

Amecia was born at only 25 weeks, and spent her first four months in intensive care. At one-month old she had a heart operation, with laser eye surgery needed shortly after to save her sight. She was then allowed to go home, weighing just 5 lbs.

"Despite being discharged from the Neonatal unit, we still spent weeks going back and forth to A&E with Amecia’s breathing difficulties, visiting several times a month,” explains Caroline 

At one-year-old, Amecia was rushed to her local hospital and diagnosed with bronchiolitis after showing signs of deterioration for around two weeks. “It all happened very quickly. At that point she was very sick and the doctors had warned that there wasn’t a lot more that they could do. 

“The doctors said there was nothing more than they could do”.

Coming to GOSH

The family were given the option to take Amecia to the cardiac intensive care unit at GOSH. Amecia was then rushed to the hospital to receive life-saving treatment provided by an ECMO machine, which would act as Amecia's lungs.

“They had to resuscitate her in the ambulance on the way there,” recalls Caroline. “When we got to GOSH we had to wait in the waiting room where a really lovely nurse helped to prepare us for her treatment. I didn’t know anything about ECMO at that point, but soon found out that it would help her to breathe.”

“It was so frightening, but the doctors and nurses were so lovely and they really helped us through what was a very difficult time. They were amazing, and gave us confidence that she was in the right place and that they would do what they could for her.”

Life on an ECMO machine

“Amecia was on the ECMO machine for ten days, and it was the worst ten days of my life,” recalls Caroline. “She was on about six mattresses as the gravity helped the blood flow down the pipes for the ECMO machine – she was known as ‘the princess and the pea’ by the nurses!

“The ten days that Amecia was on the ECMO machine really were like a roller coaster ride. One day there was good news, and the next day there was bad news. They tried two times to take her off the machine, but it didn’t work. She had swollen to twice her size and we were worried because there are so many things that can go wrong. Amecia's body could have rejected the ECMO system

“I remember the nurse asking me for a photo of Amecia so everyone could see her smile and the colour of her eyes – I thought that was so touching. The nurses helped me and her dad Richard through each day. I felt so helpless, so the nurses allowed me to help by brushing the front of her hair, they allowed be to bathe her, read, sing to her and play music while she was lying there. It all made such a huge difference.”

After ten days, Amecia had improved and returned to her local hospital. A fortnight later, the family got to go home just in time for Christmas.

Grateful for GOSH

Amecia still visits GOSH for assessments, and recently attended the patients' ECMO Christmas party.

“She’s doing really well – she’s my little miracle and without GOSH she wouldn’t still be here,” says Caroline. “When you leave GOSH you realise what an amazing hospital it is, and we will forever feel in their debt. No matter how much money we raise. we will never be able to pay them back for all they have done.”

Sign up now

Amecia and her school will be doing something silly with their hair on  Friday 10 February to raise money for Great Ormond Street Hospital Children’s Charity, and you can too. Sign up now to receive your free fundraising pack and start thinking of wacky hairstyles.