Ivy’s Story

Meet Ivy. At seven months old, Ivy weighs just 11lb and is still wearing 0–3 month clothes. But behind her tiny frame is a story that has already taken her and her family through more hospital stays, uncertainty and worry than most could imagine.

Mum, Shelley’s waters broke at just 29 weeks. She was admitted to hospital and given steroids to help prepare her baby for an early arrival. After repeated E. coli infections, Shelley was induced at 34 weeks and Ivy arrived six weeks prematurely.

Ivy struggled to breathe when she was born and was intubated and ventilated before being taken to NICU. She was eventually weaned onto less invasive types of breathing support, but she was also very sick with her feeds and developed jaundice.

At just two weeks old, things seemed to be looking up. Ivy was well enough to go home and start life with her mum, dad, Mathew, and big brothers, Oliver and Eli.

But it wasn’t long before the family found themselves back in hospital.

At home, Ivy had started to vomit violently. Shelley described it as being ‘like a volcano erupting’. They were referred to their local hospital for investigation, but nobody could work out what was wrong.

Ivy was becoming weaker, smaller and increasingly grey.

Eventually, she was admitted to the Noah’s Ark Children’s Hospital for Wales, where she was fed through a nasogastric tube for a week. She gained a little weight and was allowed home, but only briefly as she soon lost a significant amount again.

The team explored possible causes including cow’s milk allergy and reflux, while doctors, dietitians and gastroenterology specialists continued to investigate.

Ivy eventually spent three months at Noah’s Ark.

She was moved onto NJ feeds, which deliver liquid nutrition directly into the digestive tract. That, followed with a Hickman line that provides nutrition straight into the bloodstream, was successful in helping Ivy to gain more weight.

The genetic tests that were carried out during Ivy’s stay in hospital came back inconclusive and eventually she was diagnosed with a severe case of gastro-oesophageal reflux disease (GORD).  Ivy also has delayed stomach emptying, an eye condition that can effect vision,  and significant developmental delays.

Today, Ivy is still incredibly small and remains dependent on NG feeding. She has needed blood transfusions and treatment for multiple vitamin deficiencies and may eventually need a PEG tube placed in her stomach to help with feeding.

For Shelley, one of the hardest parts has been watching her baby in pain and feeling unable to make it better.

Shelley said:  “Right now, I feel angry. I don’t know what to expect for Ivy’s future. She can’t sit up on her own or hold her head. She’s like a newborn baby and although she’s growing,  she can’t live a life like this.”

During their long stay, Shelley and Ivy received support from a number of services. The play team, which the charity helps fund, became an important part of their hospital days, providing Ivy with distraction and normalising play.  It was also play specialist, Polly who referred Shelley to Noah’s Ark Charity ward counsellor, Shareefa.

Shelley said: ‘It was lovely to have someone just to chat to who wasn’t family. I kept busy by building Lego for Ivy’s room, so Shareefa bought some for me to do whilst we chatted. She was so supportive and helpful. I was so grateful to her.’

Our music therapist, Becca, was also on hand to give mum and daughter the chance to do bond and relax in a way that helped transport them away from the clinical setting for a while.  Shelley said: ‘Being able to do something nice that felt normal with Ivy despite everything was amazing.”

Now back at home, Shelley says she has found the transition difficult – “You don’t realise how much support you have in hospital until you’re home. There’s no one at the end of the buzzer when Ivy has pulled out her NG tube or when she’s in pain.’

Ivy’s journey is far from over and her family are still trying to work out what the future might look like. But Shelley says that support they received at Noah’s Ark has helped them through some incredibly difficult days: “The team at Noah’s Ark don’t realise how special they are. I don’t know where we would be without their support.’

For families like Ivy’s, a children’s hospital is about more than the medical care. It’s about having someone sit with you, to listen, to make your child smile and help you feel a little less alone.

That’s why today, on the International Day of Charity, and every day, your support matters.