Mum Emma Wood says proposed changes to hospital services will be a death sentence for her 22- month-old son Rhys.
Rhys suffers from a rare condition affecting his breathing – so rare, in fact, he is the only child in Shropshire with the illness.
Emma, 28, from Harlescott, claims the plans to move children’s inpatient care from the Royal Shrewsbury Hospital to Telford’s Princess Royal Hospital, will be catastrophic for Rhys who has to visit the RSH at least once a fortnight for scheduled care, as well as for regular emergency treatment.
Rhys suffers from the life threatening condition Subglottic Stenosis and Laryngomalacia which means his upper airway above the voice box is too narrow for him to breathe himself and he has to have a special tube.
Staff at the RSH had to be specifically trained to deal with him. Emma said if the moves go ahead she will have to move to Telford – something she does not want to do.
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Rhys’ story by Emma Wood:
“After reading about the fight to protect Shrewsbury’s hospital services, I felt I had to get in touch and join everyone in the campaign to stop the closure of our women’s and children’s facilities at the RSH.
I have a son who has a severe life-threatening condition and is extremely vulnerable needing 24/7 care, so plans to change the services he receives will, I seriously and genuinely believe, put his life at risk.
Being close to hospital is absolutely vital because of the nature of Rhys’ condition. There is just no time when there’s a problem with his airways. If we have to get on the M54 and hit traffic it will be impossible, it’s just a death sentence.
He’s the only child with his condition in Shropshire and Mid Wales and they’re saying they won’t have 24- hour assessment for children at the RSH–Rhys needs someone to be there.
My 22-month-old son was born prematurely at 33 weeks and was not breathing when he was born but was soon treated and whisked away to the neo-natal ward. Because the hospital was close to home and experienced staff had been warned to prepare for the planned premature arrival, Rhys was born safely with no long term damage.
After almost three weeks and lots of intensive care Rhys came home. However five days later he was sent to the RSH children’s ward suspecting a heart problem.
At fourweeks- old on April 4, 2009, while on the children’s ward after having another blue episode and severe respiratory problems, Rhys tired and stopped breathing, alarms were sounded and all hell broke loose.
Staff from Liverpool’s Alder Hey Children’s Hospital intensive care team had to be sent to Shrewsbury because he needed specialist care.
Days later in Liverpool, Rhys again stopped breathing and another traumatic rush of even more staff from intensive care whisked Rhys off the ward to intensive care. He was given a MRI scan which sadly was the beginning of a long and heart-wrenching journey that Rhys and our family are still living.
On May 1, 2009, Rhys was diagnosed with the life threatening condition subglottic stenosis and another dangerous condition, laryngomalacia, meaning his upper airway above the voice box was so narrow he could not breathe by himself.
The surgeon had to resort to his last option of taking Rhys to theatre to give him a tracheostomy tube, which would enable him to breathe and thrive.
The next 20 months that followed are difficult to put into words because there is no short story. It has been so distressing.
On May 2, 2009, Rhys was taken to theatre and his life changed forever. Once the tracheostomy was put in, I faced weeks of rigorous repetitive training by the staff at Alder Hey to learn how to care for my baby.
We nearly lost him last year and if it wasn’t for the dedication of the doctor who came to our house with the emergency team from the RSH children’s ward we would have done. I’ve got another son Lewis, who’s nine, the impact on our family life has been overwhelming.
I am a single parent and would have to move to Telford if they move services which I don’t want to do and I shouldn’t have to.
People at the hospital have been specifically trained to look after Rhys and I can’t imagine what would happen if they’re moved. We have to go to hospital for regular clinics and therapy, and then for emergency trips but you can’t predict when they’re going to happen, they could be any time of day or night.
Rhys faces major surgery in 2012 in an attempt to ever get him breathing by himself, a process that will take years. Shrewsbury Hospital is vital for us.”
Vicky Morris, chief nurse and director of quality and safety at The Shrewsbury and Telford Hospital NHS Trust, said: “We need to make sure that the issues that are raised are central to the way the new services are designed, including ensuring that families and children have timely access to safe care in an emergency.
“If these proposals are approved following consultation then the majority of patients will continue to go to the same hospital as they do now. Also, the Royal Shrewsbury Hospital will have a children’s assessment unit and continue to have a 24-hour accident and emergency department.”