Amelia-Rose’s parents, Steph and James, share their daughter’s story.
James says: “At our local hospital, our 20-week scan picked up that something wasn’t quite right, and we were referred to Great Ormond Street Hospital (GOSH). Three days before Christmas, we had a scan at GOSH and found out that our little girl had a very rare heart condition.
Amelia-Rose was diagnosed with a right sided aortic arch with an aberrant left subclavian artery and a left retrooesophageal ductal ligament. This caused the development of a vascular ring around her trachea and oesophagus.
Before babies are born, there’s a blood vessel that connects the pulmonary artery (main vessel supplying the blood to the lungs) to the aorta (main vessel supplying the blood to the body). Normally, this connection closes off shortly after birth. With Amelia’s heart, her aorta is the wrong way around and that vessel went from one side of the aorta all the way round to the pulmonary artery. This meant it went round her trachea and her oesophagus, and this is what caused her problems.
This diagnosis was a lot to take in, but we were reassured that it wouldn’t affect Steph’s pregnancy. Steph continued to be monitored throughout and Amelia-Rose was born safely.
Three months after Amelia-Rose was born, an ultrasound picked up that she also had an atrial septal defect (ASD): a hole between two chambers in her heart that prevented blood from being pumped properly. Instead of closing up itself, the hole grew bigger.
We have been under GOSH’s care ever since.”
First and second heart surgeries
“For the first year of Amelia-Rose’s life, she suffered a lot with her breathing. She would have high-pitched noisy breathing, known as stridor, which sounded as if she was forcing her breath out. She had bronchiolitis multiple times and the first time she experienced this she was put on a continuous positive airway pressure (CPAP) machine, as she was only breathing at 40% of her capacity.
In December 2017, Amelia had her first heart surgery at GOSH. She had a surgical repair of the vascular ring, a left retrooesophageal ligament division and a left subclavian artery reimplantation.
We went home from that first surgery after a couple of days, but 11 days later Amelia-Rose deteriorated.
Unfortunately, she developed a rare complication known as chylothorax. A fatty fluid leaked into her chest cavity and caused her left lung to collapse.
On New Year’s Day 2018, she was blue-lighted to GOSH. She had emergency surgery in the early hours of the next day to insert a chest drain to remove all the fluid from around her lung and tie off the leak. It was incredibly frightening, but she got through it.”
Staying in parent accommodation
“After her second heart surgery, Amelia recovered on Bear Ward and we were able to stay at the GOSH Charity parent accommodation. The facilities we were given were second to none.
We had a room that had a bathroom in it, two beds, a shared kitchen and a front room. The place was spotless, and there were enough facilities for all the families to use. That accommodation was all provided by GOSH Charity.
Had parent accommodation not been available, I don’t know where we would have been able to stay. There are hotels but because we’ve been in and out of hospital with Amelia so much, we haven’t been able to work properly. It’s very difficult to maintain a normal working life when your daughter is having surgery. Those facilities have been an absolute godsend. They’ve been a lifesaver to us.”
Steph says: “Luckily we were both able to stay with Amelia during the day and the hospital staff reassured me that if I felt anxious during the night at all while in parent accommodation, I could call the ward. It didn’t matter what time. They were brilliant.”
Third heart surgery
“In December 2018, a year on from her first surgery, she experienced recurrent wheezing and multiple hospital admissions for bronchiolitis. It was decided that her atrial septal defect (ASD) would be closed through keyhole surgery. That was a big weight off our shoulders, as it meant we didn’t have to go through open heart surgery again.
We stayed in the same parent accommodation for almost two weeks, in the same room. It was great to be somewhere we knew already.”
Play team and staff support
Steph says: “The Play team were brilliant. As Amelia got older, she was more aware of what was going on and she would get agitated and bored. We were stressed and tired so entertaining her all the time was difficult. The Play team would come and do new things with her, things that she’d never done before. It was lovely to have them there. They were so reassuring, and it was great to have them to talk to.”
James says: “They would make fun out of everything and create things out of nothing. An aluminium pot could become exciting! They would use all the resources they had. Amelia always had a smile on her face and that was down to the Play team. She wouldn’t have been as happy as she was if they hadn’t been there to help and entertain her.”
Being at GOSH over the Christmas period
James says: “We were in GOSH during December 2017 and December 2018, for Amelia’s first and third heart surgeries. GOSH do so much for people throughout Christmas. It’s not nice for anyone being in hospital during this time, especially when you are worried about your child. Santa came round and visited every ward and gave every patient a gift. They have a church service at the Chapel and we went to the carol service one year which was amazing.”
Steph says: “GOSH is always decorated beautifully with paper chains, stickers and stockings everywhere. We saw the Stocking Appeal with all the stockings the children can read and create themselves.”
James says: “The Play team visited any children who were confined to their beds and brought the activities to them.”
Ongoing support from GOSH
“Amelia is still under the cardiac and respiratory teams at GOSH. She has a review with the cardiac team every six months, and she has appointments with the respiratory team every month or two. She has a lung condition where her bronchial tubes are narrowed and floppy, and she has taken part in lots of tests and two sleep studies where her breathing has been monitored overnight, including one this month.
“She may have to have another surgery in the future, but we feel very comfortable because we know that she will be in the safest hands possible, not just in the country but in the world. GOSH have done wonders for our little girl.”
GOSH during the Covid-19 pandemic
Steph says: “During the Covid-19 pandemic we haven’t wanted to take the risk of travelling on public transport. She had her heart check-up at GOSH last week and my mum organised transport for us to avoid the risk of us taking Amelia on the tubes. We haven’t had any appointments over Zoom because her check-ups usually involve an electrocardiogram (ECG) and they physically have to check that everything is as it should be.”
James says: “The hospital has put all sorts of safety systems in place. You’re provided with masks and sanitizer as soon as you enter and the arrow markings on the floor keep everyone going the right way. There’s always someone to help so if you have any problems you can talk to them at a safe distance. GOSH have done really well in the circumstances and the systems have been well thought through.”
Amelia now
Steph says: “We’ve had a couple of scares during lockdown where Amelia’s had to go to hospital, but she’s doing really well. Her personality is amazing, she’s extremely sassy and she’s got a lot of attitude. When I look at her now, I can’t believe how far she’s come.”
Giving back to GOSH
James says: “The first thing I’d say to anyone considering fundraising for GOSH would be thank you. We wouldn’t be where we are today with Amelia without the fundraising and support from GOSH Charity.
“Our own fundraising through RBC Race for the Kids has given us a sense of joy. GOSH is the most amazing hospital and we’re so grateful Amelia continues to be under their care. Ultimately, GOSH saved our little girl and made her the cheeky little person she is today. They are a massive part of our lives and we could never thank them enough.”