'First smiles at GOSH’: Meet Ellie

Sandra and Ian found out that they were expecting in November 2023, following IVF. “It felt unreal, nerve-wracking, petrifying and exciting,” Sandra says.

Ellie was born by C-section in June 2024, at 35 weeks and four days. “The moment her head popped out, she was screaming, which was the best sound in the entire universe,” Sandra says.

Initially Ellie needed oxygen to help with her breathing, but otherwise she seemed to be doing okay. But after around a week, her health quickly deteriorated.

“We were told she’d been very sick, and the colour of the sick [was] not good,” Sandra says.

“She’d been passing her meconium [a newborn's first stool]; we’d changed numerous dirty nappies. But it wasn’t right, and her tummy was getting bigger and bigger.”

Ellie was transferred to another hospital by ambulance.

“She went straight into intensive care with suspected sepsis, which she turned out to have. She also had an E-coli infection and suspected rare bowel disorder.

“They managed to eventually get the infection under control. Basically, she had inflammation within the large and small bowel.”

A few months later, Ellie was fitted with a stoma – an opening made in the tummy, enabling waste to leave the body.

When the stoma didn't work, she was transferred to GOSH for specialist care.

When Ellie arrived at GOSH it was late in the evening, and she was taken straight to surgery at the Neonatal Intensive Care Unit (NICU), to refit the stoma. At that point, they knew her bowel was perforated.

Sandra and Ian were put up in emergency accommodation, funded by GOSH Charity.

“We got a phone call at about 5am saying the surgery’s done, everything’s okay.”

By the following afternoon, the stoma was working.

"It was hugely reassuring. But she was very, very poorly,” Sandra says. “If it wasn’t for this surgery, she wouldn’t be alive. It’s as simple as that.

During this time, Ellie, Sandra and Ian got to know one of the nurses on NICU. “He was an absolute star. He was lovely with Ellie, amazing with us," Sandra says.

Ellie was soon transferred to GOSH’s Chameleon Ward, which cares for children having specialist neonatal and paediatric surgery.

The first week after the operation, Ellie was recovering well.

“She surprised everyone, and we were just like ‘wow, this is amazing’,” Ian says. “The team at GOSH had been absolutely brilliant.”

Not before long, Ellie began hitting milestones.

"She did really well with the feed side of things. She started putting on weight, being more active and vocal,” Sandra says.

Music can be a big part of a patient’s experience at GOSH, owing to the hospital’s arts programme – GOSH Arts – and its music therapy department.

During her time at GOSH Ellie had been awaiting hearing tests at the hospital's Sight and Sound Centre, but Sandra and Ian became confident she can hear.

"Ellie has Down's syndrome and as a result is at an increased risk of hearing and sight issues, so we had to have close checks," Sandra says.

“We weren’t 100% sure on it, but then when she was down in NICU, we had a guy come round playing the guitar,” Sandra says. “She was looking at us and he was the other side of the cot, and she turned her head the moment he started playing. It was like ‘yeah, you can hear’.

“Just that confidence. There was nothing else going on to make her turn round or anything like that.”

From the moment they arrived at GOSH in August 2024, GOSH came to mean a lot of things to Sandra and Ian.

“To me, it’s been the place that gave my daughter a life worth living as well as giving my husband and I the support we needed to be the best parents we could be,” Sandra says.

GOSH has also been a place of “firsts” for the family.

"First bath, first time being off machines and being healthy, first time of proper tummy time and first smile,” Sandra says.

“First time fed by a bottle, first time outside in a pram, and first time outside full stop,” Ian adds.

From filling out Disability Living Allowance (DLA) forms for Ellie to coordinating travel expenses, Sandra and Ian received support from multiple different teams and staff members at GOSH.

Another team that’s been a big part of their stay is the Play team. Funded by GOSH Charity since 2012, there are currently 52 team members. They make hospital a little bit easier and a lot more fun, while helping to ease fears and concerns for patients, siblings and parents.

“When we were in NICU, they had a whole pile of books which was brilliant because I didn’t have anything with us. So I was borrowing those and reading to her.”

While on Chameleon ward, a member of the Play team brought in a mirror so that Ellie could look at her reflection for the first time.

“She looked at me, and then looked in the mirror, like she was thinking ‘I’m not quite sure what I’m seeing here, what’s going on’,” Sandra says. “That is what you do to try and get her to understand that she is her own sentient being.”

Today, Ellie is doing well. The family are back home in Norfolk and enjoying life together as a family of three.

"It’s about us giving her the confidence to believe in herself,” Ian adds. “It’s the team at GOSH that have actually been able to give her that chance.”

At GOSH Charity, we’re here to help give seriously ill children like Ellie the best chance and the best childhood possible.

Find out more about how we support children and their families at GOSH, and discover how you can get involved.