THE parents of a young boy diagnosed with several life-threatening conditions at birth have shared their ‘devastating’ story to raise awareness of the charity that gave them vital support.

When Clare and Matthew Powell’s son Jack was born in February 2021, doctors found that he had a combination of life-threatening conditions including a hole in his heart, a rare defect in an artery to his heart, and severe breathing difficulties.

At just nine weeks old Jack needed to have surgery on his trachea and reimplantation of the artery in his heart.

And at eight months old he needed specialist surgery for a tracheostomy (an opening through the neck into the windpipe to help someone breathe better), followed by heart surgery when he was eleven months old.

Looking after such a seriously ill baby put the entire family under enormous pressure and the family were supported by the Rainbow Trust Children’s Charity.

“Jack’s diagnosis at seven weeks old was a lot to take in,” said Mrs Powell, from Appleby.

“It was overwhelming.

“He spent the first eight months of his life in either the Freeman’s Hospital or Royal Victoria Hospital in Newcastle before we were able to take him home.

“This was made so much harder due to the pandemic as his older brother Daniel was not allowed in to see him and Matthew and I had to take it in turns to visit. 

“We were delighted when he was initially discharged but sadly, he only spent one week at home before going back to hospital for a further six weeks. We were finally able to bring Jack home in January this year.”

Mrs Powell had to take three months unpaid leave at the end of her maternity leave, and then had to resign while waiting for support from a care organisation and carers allowance.

“Being introduced to our Rainbow Trust family support worker whilst Jack was in Freeman’s Hospital was invaluable,” she said.

“The stress and strain both emotionally and financially were a lot for us to cope with.

“Having your seven-week-old son admitted to hospital and, after two weeks of tests, being told this condition is so severe that doctors can only talk about palliative care, is devastating.

“Seeing your nine-week-old baby going to theatre for major surgery is heart-breaking. And having to leave your older son at home, arranging constant childcare and then having to stop work so both your children have a parent with them, was incredibly overwhelming and stressful.”

The Westmorland Gazette: CELEBRATING: Jack Powell with his mum, dad and brother DanielCELEBRATING: Jack Powell with his mum, dad and brother Daniel

While Jack was at the Freeman Hospital, family support worker Monica Dooley from Rainbow Trust’s North East Care team started supporting the family. She looked after Jack in hospital giving the Powells a break from the ward to be together, get some rest and spend time with Daniel.

Monica also provided emotional support to Mrs Powell.

“Having somebody to talk to, especially when you spend weeks, and months, on a hospital ward is invaluable,” she said.

“Having an expert professional listening and providing some comfort has really helped me to manage my mental health and my ability to cope with the situation.

“When Jack was discharged last January, Rainbow Trust continued to support us and Sophie Harris from its North West care team became our dedicated family support worker at home. 

“Matthew and I felt that Jack’s three-year-old brother Daniel needed to be the main focus of Sophie’s support. She gives him special time playing games and visiting the park as well as providing some much needed emotional and practical support to me and Matthew.

“I honestly don’t know what life would have been like without the help of Monica on the hospital ward and Sophie now at home.”

The family is now fronting the Rainbow Trust Children’s Charity’s Summer Appeal, to encourage the public to support the trust and to raise awareness of the vital help it gives families with a life threatened or terminally ill child.

“I would be very grateful if members of the public could support Rainbow Trust by donating today,” said Mrs Powell.

“There are countless families like ours doing all of this on their own. I dread to think how I would have had to cope without Monica and Sophie.”

To support Rainbow Trust’s June appeal and make a donation visit rainbowtrust.org.uk/donate/summerappeal   or text SUMMERAPPEAL followed by the donation amount to 70490 to give that amount.

Texts cost the donation amount plus one standard network rate message, and people will be opting into hearing more from Rainbow Trust.

To donate but not hear from the charity, please text SUMMERAPPEALNOINFO instead.