Parents’ gratitude to medical staff
EXTRAORDINARY: Parents speak of love for tragic five-month-old Isaac
THE parents of a baby born with a terminal muscular disease have spoken warmly about the “amazing” people who made such a difference during his tragically short life.
Tiny Isaac Wilkins was born last October with Spinal Muscular Atrophy (Type 1), known as SMA, a neurological disease that prevents the muscles from developing and which left him very weak.
Thanks to the dedication and “brilliance” of the network of doctors and nurses they were helped by, Isaac’s parents Sarah and Jason, who live in Creeting St Mary, near Needham Market, managed to spend five special months with him before he peacefully passed away three weeks ago.
Mr Wilkins, 29, said: “As much as it was a devastating time in our lives, we met some amazing people and it restores your faith in human nature. There are some people out there doing extraordinary things and changing people’s lives. They made a real difference to our and Isaac’s lives.”
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Mrs Wilkins, 26, said that although her pregnancy had not been planned, the news was a “nice surprise” and she and her husband had been very excited as the birth drew nearer.
Mrs Wilkins went to hospital for a routine procedure but while she was at the hospital she started to feel faint and doctors decided she should have an emergency Caesarean, meaning Isaac, their first child, was born about three weeks early.
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Mrs Wilkins said everything seemed “absolutely fine” with him and the whole family were delighted with his arrival, but as he approached his six week check-up the family’s health visitor raised concerns about his muscle tone.
After a visit to the family GP, Isaac was referred to hospital and he was quickly placed on the high dependency ward under the watchful eye of paediatric consultant Dr Jim Gould.
After conducting tests, Dr Gould broke the news that he believed that Isaac had SMA in its most severe form and that there was no cure.
Mrs Wilkins said: “Our whole lives fell apart at that moment. We are really lucky that Jay and I are really open with each other and really talk about things. That made a huge difference.”
Isaac spent time at Addenbrooke’s Hospital in Cambridge and the East Anglia’s Children’s Hospice and twice battled back from life-threatening bronchiolitis.
He was very weak but eventually returned home with his parents in the New Year thanks to the outstanding support provided by Children’s Nursing Team (East), based at St Clements, on Foxhall Road, Ipswich.
Isaac died on March 12 at his home with Mr and Mrs Wilkins at his side, Mrs Wilkins said he “just closed his eyes and stopped”.
She said: “We were so lucky to have had Isaac because he was so lovely and brought so much joy and happiness to everybody who knew him.
“Considering he was given just an hour to live at eight weeks, he managed to survive 20 weeks - which is unbelievable. It’s made us better people. It’s a shame that you have to wait for things like this to happen to see how many wonderful people there are out there.”
The couple and their friends and family are now planning to raise money for the nursing team, with an event at the appropriately-named Ipswich waterfront bar Isaac’s in the pipeline.
Mrs Wilkins added: “The community nurses were always on the other end of the phone and Isaac was able to have 24-hour care. They would also check up on us too - they were truly amazing. They allowed us to enjoy Isaac as a baby, not a baby with SMA. We’re really grateful for all their help.”