Teen with severe scoliosis will die without 'urgent medical care', parents warn
The parents of a teenager with severe scoliosis have warned that if their son 'doesn't get urgent medical care, he will die'.
Mikey Henry-Benson, 17, has been fighting for scoliosis surgery for nearly three years but has not been able to get surgery through Children's Health Ireland for his condition.
While he will receive a GP referral to meet consultants at Great Ormond Street Hospital in London to see if they can perform the life-changing surgery, the HSE has confirmed to this newspaper that a consultant's referral is required in order to benefit from any treatment abroad scheme.
At nine months old, Mikey, from Ballina, Co Mayo, was diagnosed with a neurological condition called schizencephaly.
His parents, Penny Henry and Michael Benson, were told his 'life wouldn't be like other children' and that he would have developmental delays and wouldn't be able to walk or talk.
His mother describes Mikey as a 'happy and funny' teenager who loves his friends, school and music. Mikey was not born with scoliosis but the family started noticing a curvature in his spine in 2022.
An X-ray showed he had developed scoliosis, and in November 2022, teams in Tallaght told the family he would need surgery.
Ms Henry explained: 'Because of the X-ray, they could see the curve starting to get worse.
'We were told that both quality of life and life expectancy are improved if the curve is treated. '[The doctor] said they would get Mikey assessed with a multi-disciplinary team and an anesthesist. But no date was given.
'In February [2024], I raised concerns about Mikey again, and I got a response telling me that there still is no date for Mikey's surgery.
'He was not monitored. His lungs were not monitored. His spine wasn't monitored.'
In March 2024, there was still no date for Mikey's surgery and he continued to be monitored at home by his parents, who found that his oxygen levels were very low.
At the end of May, he was admitted to Mayo General Hospital and later transferred to Crumlin Children's Hospital, where a pre-op assessment was done. It was found that his lungs were damaged and he had chronic type 2 respiratory failure. Doctors in CHI said they could not do the surgery.
Mr Benson stated that as early as June, they asked about how they could transfer to Great Ormond Street in London.
Ms Henry said they believe Mikey was treatable when he was in the hospital last summer. Now, they do not know if he is.
In April, Mikey and his parents met an American paediatric surgeon in Dublin. They hoped this doctor would provide an independent assessment and refer them to Great Ormond Street. However, no referral was forthcoming.
Last week, the family's GP in Mayo said they would refer Mikey to Great Ormond Street Hospital, but the HSE told us a GP's referral would not be enough.
Ms Henry said funding had been put aside for scoliosis patients who need treatment in the US or the UK. She said the Government must ensure Mikey can avail of this when he is referred to Great Ormond Street and that he 'shouldn't be left out'.
A HSE spokeswoman said patients wishing to access healthcare/treatment abroad, including scoliosis treatment, can use three mechanisms: Treatment Abroad Scheme, the Northern Ireland Healthcare Scheme and the Cross Border Directive.
She added: 'A GP referral letter for a consultation is accepted under the CBD and NIPHS, but these schemes do not cover Great Britain [England, Scotland and Wales].
'Access to treatment in Great Britain is within the scope of the TAS. To access TAS, a public hospital consultant in Ireland must refer you – we do not accept referrals from GPs or self-referrals.'
A scheme is in place through CHI to allow children to get their surgery in international facilities.
They include Morgan Stanley Children's Hospital in New York and Great Ormond Street in London.
But this is only available to 'children who meet the criteria to be deemed clinically suitable, whose consultant in CHI has approved their travel and agreed to take them back on return to Ireland, and the treating hospital abroad have approved their suitability'.
Mr Benson added: 'There's one thing for certain – if Mikey doesn't get urgent medical care, he will die. That's for certain.'
CHI said they cannot comment on an individual patient's case.
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