Kildare parents want more to be done over spina bifida in Ireland

For the past eight years, the mother of a boy from County Kildare with two separate medical conditions has passionately urged the Irish government "to make a stand" on surgery times and cancellations for those with spina bifida (SB).

Monasterevin woman Lisa Brett has pointed to her son Eddie as an example of a child that has been negatively affected by surgery cancellations.

Eddie is an eight-year-old boy who has both SB and Hydrocephalus (HC).

SB is a condition that affects the spine and is usually apparent at birth, and is a type of neural tube defect, while HC refers to a build up of fluid on the brain.

According to the UK-based charity Shine, the two conditions are often linked.

Three Sinn Féin (SF) politicians also met with the families of Kildare children with SB and/or HC last Friday, February 11, at the office of Réada Cronin TD in Naas.

Waterford SF TD and health spokesperson David Cullinane joined Ms Cronin and Patricia Ryan TD to discuss the issues facing families of children suffering from SB and HC.

The event was praised by Ms Brett, who optimistically said: "I thought it went really well: SF has really got behind us, and they have really fought for us.

"I am really happy that there is someone is fighting for us, because these children deserve better, they really do," she added.

In addition, the very dapper Eddie said he too enjoyed the event, and also the goodies provided at the meeting.

'A critical issue'

Mr Cullinane said, of meeting with the families, that "the story is the same: it’s one of capacity, delays in getting surgeries, problems in getting aftercare and annual check-ups... the waiting time is a critical issue."

He explained: "The problems existed long before the Covid-19 pandemic... we’ve known for a long time what the capacity deficits: we just haven’t seen the solutions put in place

"To be fair, in the last year, Children’s Health Ireland has pushed very hard for capacity: they have got some funding, and I commend those in CHI and also in Crumlin and Temple Street for doing what they can with their resources.

"However, it’s at a Central level, a Department level and Ministerial level where there hasn’t been movement as quick as there should have, and this had led to frustration from the parents of children with these conditions, as well as the children themselves."

Naas Hospital

Mr Cullinane further explained that he recently visited Naas General Hospital (NGH).

"I met with the manager and clinical director and other staff at NGH... a lot of the problems are the same in the hospitals across the country: lack of surgical theatre capacity, a lack of consultants, problems with diagnostics and beds.

"There are also inefficiencies in the system: it takes far too long for decisions to be made, for example, NGH endoscopy unit, first proposed around 2011, still isn’t built."

He continued: "There’s a real frustration when you can go into a hospital who has shown that they have solved some of these issues due to their own innovation.

"However, they need the tools to do the job, and if they get them quicker and the plans that they have are properly resourced, they can do it... it’s not beyond us."

Children in Ireland in pain

Réada Cronin also commented on the event, saying: "Nobody wants to know that children in Ireland are in pain: if this was happening in other countries, we would be sending teams of doctors out if we knew that this was going on in our own State.

"I don’t think anyone would object to fulfilling the wants and needs of these families."

She also pointed to surgeon Connor Green, who she said is lobbying for €5 million to go towards setting up a state-of-the-art facility to do operations to help children with SF/HC in Cappagh.

In addition, Ms Cronin echoed Mr Cullinane’s sentiments that the issues present in hospitals, including NGH, have been present since pre-Covid times, and said that Ireland must look at modelling its health system on other European countries, such as Spain and England.

Mr Cullinane and Ms Cronin’s sentiments were further echoed by their party colleague, Patricia Ryan TD from Kildare South, who criticised the current rate of progress regarding SB and HC surgeries: "I think it is a disgrace that these families are waiting so long to have their children looked at.

"I think the government must provide the money, and we need to move forward," Ms Ryan added.

Further information about SB and HC can be found at the official website of the Irish Association for spina bifida and hydrocephalus, at https://sbhi.ie/.