‘We didn’t know if our newborn daughter would survive the night’
BETH Rees said she felt a huge sense of relief when her healthy-looking baby daughter, Florence, was put safely into her arms following a straightforward delivery.
But only a few hours later the newborn needed to be rushed to the neonatal intensive care unit with severe breathing problems and blood oxygen levels at dangerously low levels.
She remained stable for the first 24 hours in the unit until she began having a seizure in her dad Stuart’s arms, followed by a series of more violent seizures, which hospital staff struggled to control.
The decision was made to take the one-day-old child away from her terrified parents for an urgent brain scan – the results of which were truly life-changing for the entire family.
“Flo had had a massive bleed in her brain and we were told there were no guarantees that she would survive the night. The bleed had damaged her brain but there was no way of knowing to what extent, so even if she were to survive we were advised to prepare ourselves for the very real possibility that Flo could be left severely disabled,” said Beth.
Florence did make it to the morning, and over the course of the coming days her clinical team at the University Hospital of Wales found the right combination of medication to control the seizures and change her condition from “critical” to “stable”.
But the newborn was about to face another huge challenge. During the days that followed she started suffering with severe reflux, which caused her to vomit up all her feeds.
As a new baby who was now rapidly losing weight, this very quickly became the biggest and most urgent cause for concern. It took another seven weeks for the clinical team to stabilise Florence’s feeding enough for her to go home. During those weeks her mum and dad took it in turns to hold a constant vigil at her side.
Beth, recalling the events of May 2018, added: “I didn’t want to leave Flo for a minute. I felt bereft that this was happening to her and terrified about the completely uncertain future that I felt lay ahead.”
Florence finally went home with a nasogastric tube (NG) to receive her feeds. Though Beth and Stuart had wanted more than anything to take their daughter home, they admit that for a while things felt that they had gone from bad to worse.
After only a month, their daughter was admitted again and she continued to vomit up her feeds. Her parents said her growth and general health were suffering as a result.
Still very fragile, Florence caught infection after infection and would need admitting to hospital repeatedly for observation and nutritional support. With toddler Seb at home, Beth and Stuart’s families rallied around to help.
“Those stays in hospital were incredibly hard. I felt so guilty about being away from Seb, but with Flo so poorly I knew I had to be with her,” Beth added.
“At certain points Flo would vomit up to 20 times a day and some of that would be blood. I found it almost impossible to do anything with her or enjoy time with her because I was feeling so sad, and also because even moving her slightly would make her sick.”
Beth said the play team at the Noah’s Ark Children’s Hospital for Wales made a huge difference.
“The play specialist helped us see the child beyond the illness. She knew exactly what to do with Flo and would bring us play equipment and include us in activities so gradually we felt more confident to do the same,” she added.
“She introduced us to the sensory room so when Flo was well enough, we got a break from our room and she’d encourage me to take breaks. It’s hard to imagine how much harder it would have been without that kind of support.”
After six months of shuttling between home and the Island ward at the children’s hospital, Florence had an operation to fit a gastrostomy tube so that she could be fed directly through her stomach instead of a naso-gastric tube.
The procedure made it much easier to feed her, but hospital stays remained a frequent part of the family’s life right up until the first lockdown in March 2020.
The break from fighting off the common viruses and infections that she caught so easily in normal life gave her body the chance to grow and strengthen. Though there have been a few blips, Florence has now managed to mostly stay out of hospital for the past two years.
“The change we’ve seen in Flo has been nothing short of incredible. Early in that first lockdown she got up and walked for the very first time,” Beth added.
“And even more incredibly Flo has started to eat. She still receives her nutrition through her gastrostomy but that’s such a milestone.”
Beth, from Heath, Cardiff, said three-year-old Florence’s strength and determination has inspired her to sign up for the Cardiff Half Marathon in March to raise funds for the Noah’s Ark Charity.
For more information about the charity and how to help please visit https://noahsarkcharity.org/