Children’s Hospice Week: “Watching Ronnie improve every day has brought real hope”

Categories: Care and Featured.

Haven House Children’s Hospice in Essex has been supporting Ronnie and his mum Kim since arriving from the paediatric intensive care unit at Evelina Children’s Hospital in mid-April, during the peak of the Covid-19 pandemic. Here they share the story of his recovery.

Ronnie has a rare condition called PRPS1, which leads to muscle weakness and kidney issues. His condition requires long-term ventilation to support his breathing. Three-year-old Ronnie had been in hospital since February and had experienced quite a turbulent time following several failed attempts to wean him off his ventilator.

Transferring him to Haven House allowed a much-needed bed in an intensive care unit to become available for another sick child, while providing a safe haven for Ronnie from the hospital environment where Kim was worried he may be at risk of contracting Covid-19.

On arrival at Haven House Ronnie needed his face mask ventilator for 18 hours a day. Through virtual training with the team at the Evelina, hospice staff who are specialised in caring for children on ventilation were able to familiarise themselves with the ventilator Ronnie uses.

“Being in hospital during the Covid-19 pandemic was an extremely worrying time for us,” says Kim. “Ronnie’s condition means he has a very weakened immune system and I didn’t feel that him being on a hospital ward was the right place for him to make his recovery.”

“I spoke to our hospital consultant about my concerns and it was then that a hospice was suggested. I was relieved and was looking forward to going to Haven House – even though I wasn’t sure what to expect. The Haven House team are so friendly, and Ronnie absolutely loves all the staff. We settled in easily and we felt comfortable. They looked after us so well” adds Kim.

Staff worked one to one with Ronnie and Kim to wean him off the ventilator in set increments so that when he was ready to go home, he was back to night-time ventilation. Physiotherapist Donna supported Ronnie three times a week providing physiotherapy sessions to make him stronger.

“When Ronnie came to the hospice, he was quite weak, recovering from a very serious bout of illness,” says Haven House senior nurse Aisling Kilbane. “However, he thrived in the freedom and varied environment of the hospice which allowed him to explore the grounds and use play to exercise. He was able to use a standing frame to have lots of fun with our play team and even celebrated his 4th birthday with us here!

“Ronnie is doing so well, and he has reached all his targets. His mum was able to stay with us at the hospice too, an expert parent that we worked hand in hand with to ensure we all provided Ronnie with the best plan to move forward. This family is a wonderful example of how persistent effort, open communication and strong relationships can achieve what seems like the impossible.

“Having Ronnie and Kim at the hospice was a privilege for all staff. Watching Ronnie improve every day brought real hope too. We would like to thank our NHS colleagues at the Evelina hospital for all their support with getting Ronnie home.”

For more information visit Haven House Children’s Hospice

Children’s Hospice week runs until June 28