“I honestly think I would have slept in my car outside the hospital”
When Danielle James attended her 20-week pregnancy scan, she received devastating news. Her daughter, Harlow, had several serious heart conditions, including a large ventricular septal defect (VSD), moderate VSDs and pulmonary stenosis. At one point, doctors were also concerned about an artery that had wrapped around her oesophagus.
“All these issues would require surgery,” Danielle explains. “Harlow was given a low probability of survival after birth.”
In May 2022, Harlow was born at University Hospital of Wales in Cardiff. Initially, she was healthier than expected, but just four weeks later her condition deteriorated dramatically.
“Harlow started to drastically lose weight. She slept 23 hours of the day, was very pale and unfortunately was officially in active heart, lung and kidney failure.”
She was rushed to Noah’s Ark Children’s Hospital for Wales, where she began medication and tube feeding while doctors worked to keep her stable enough for lifesaving open-heart surgery.
Feeling isolated and overwhelmed
For Danielle and her partner, Kai, the experience was overwhelming.
“My main concern about having a child in hospital was that I’d never experienced anything on a similar scale before,” says Danielle. “There were still COVID restrictions in place, so I couldn’t have visitors or anyone to help me take in all the information I was being given.”
Spending long hours on the ward left her feeling isolated and took a toll on her mental wellbeing.
“I worried about Kai having to travel back and forth as well. It was emotionally draining and I worried about his safety travelling to and from the hospital.”
A sense of relief
Shortly after arriving at the hospital, a nurse told Danielle about Ronald McDonald House Cardiff.
“There was accommodation across the road where Kai and I could alternate between sleeping on the ward and getting a good night’s rest.”
Walking through the doors of the House for the first time brought an immediate sense of comfort.
“Immediately when walking into the House I felt a massive sense of relief. The assistant on shift greeted me with the warmest smile and the most comforting words anyone could have wished for during such an emotional time.”
“It felt like I could breathe, almost as if she had lifted a weight off my chest that I couldn’t lift myself.”
Finding moments to breathe
During Harlow’s treatment, Danielle was able to use medical passes to bring her daughter over to the House between treatments.
One memory has stayed with her ever since.
“I brought Harlow over to the House and they were celebrating five years of being open. Ironically, Harlow’s middle name is Five, after the sudden loss of a family member, and this gave me such comfort in a way I cannot explain.”
The House also provided something incredibly important during an intense and uncertain time: space to breathe.
“I remember sitting in the garden and just breathing in the fresh air, looking up at the Ronald McDonald House sign and wondering how we would have coped without being able to stay so close to the ward.”
“Leaving Harlow didn’t seem like an option for me.”
Being able to welcome family members into the House made a huge difference too.
“Mine and Kai’s family came down, we ate home-cooked meals together and cried in comfort after feeling so lonely.”
Staying close when it mattered most
Being just moments away from the hospital proved invaluable throughout Harlow’s treatment and recovery.
One morning, Danielle received a call informing her that a training slot had become available to teach her how to manage Harlow’s nasogastric (NG) feeding tube.
“I woke up to a call on a Thursday morning telling me to rush across because they had a slot available.”
“I got there within two minutes and was able to make full use of the one-hour training session. Harlow was discharged on the Saturday after completing it.”
“This wouldn’t have been possible without being so close.”
Danielle believes being nearby made a significant difference, both practically and emotionally.
“The comfort of knowing my partner was no more than 30 steps across the road if I needed him meant everything. The support from staff and having somewhere to recharge helped us get through some of the hardest days of our lives.”
A lasting connection
Danielle stayed at Ronald McDonald House Cardiff twice, for more than three weeks on each occasion.
When it was time to leave, she found it surprisingly difficult.
“Leaving the House was emotional because I felt like I was leaving a team of people who genuinely cared about mine and Kai’s mental health.”
Today, Danielle’s connection with the House continues in a very special way.
“I now work as a Family Services Assistant and have done for over three years.”
Looking back, she cannot imagine what life would have been like without the support of Ronald McDonald House Cardiff.
“To this day I don’t know what we would have done without the House. We would have had to travel back and forth, but I honestly think I would have slept in my car outside the hospital.”
Thriving today
“Harlow has officially made a full recovery. She is no longer in any organ failure and is thriving in life.”
And she already has plans for her future.
“She is obsessed with Ronald McDonald House Cardiff and claims she will be the next House Manager.”
For families facing a child’s hospital stay, Danielle has one simple piece of advice:
“Take a breath. Make use of medical passes and day passes because getting away from the clinical setting can improve your mental wellbeing drastically. Trust the process and trust the charity to support you.”
And for those considering supporting the Charity, her message is equally heartfelt:
“I encourage everyone to support Ronald McDonald House UK. The charity is essential to parents in ways you can’t describe until you’ve been desperate to just be next to your child. The charity will forever hold a special place in my heart, and I’ll forever be grateful for the staff.”
