‘It’s hard having to fight all the time, but Abbie Rose is my world’

The angry mother of a little girl from Bettystown with special needs has opened up about the constant battle to access services for her daughter.

Five-year-old Abbie Rose O’Hehir who was born in 2015 with spina bifida and hydrocephalus has been through a lot in her short life.

Spina Bifida is a birth defect that occurs when the spine and spinal cord don't form properly. Hydrocephalus occurs in many babies born with the condition. The extra fluid can cause the spaces in the brain, called ventricles, to become too large causing the head to swell.

The little girl who in just one year underwent nine major surgeries to have a shunt inserted to drain fluid from the brain along with a procedure to close her spine at just one-day old is described as a “warrior” by proud mum Denise O’Hehir.

Denise has voiced her anger that Abbie Rose who is a wheelchair user and has made huge progress recently will see her services stopped by Enable Ireland when she turns six at the end of May and her care will subsequently be handed over to the HSE.

The Bettystown mum has set up a fundraiser for her physio needs. She said:

“I was told that once Abbie Rose turns six that she going to lose all of her services through Enable Ireland and will be transferred to the HSE.

“We had only been practising doing self-transfers out of the wheelchair and she has been doing so well and they have told me they are going to see her this week, next week then they will discharge her.

“I was told last year there was a new service coming in through the HSE that meant that she would have been able to keep her services until she was sixteen but was told just last week that this hasn’t been signed off so she will have to go on HSE waiting lists.

“She wants to do well and is so proud of herself when she makes progress and knowing that in two weeks all of this will stop is just heartbreaking.

“After doing so well and after doing so much work with her, she will just be left to her own devices.”

Abbie Rose’s needs are complex and full time carer Denise says she feel “let down” by the health service and the government.

“Abbie rose cannot go the toilet on her own, as with many kids with spina bifida her bowel and bladder issues cannot be fixed she will have to be catheterised for the rest of her life. You are doing physio and school work and trying for her to be a normal child as well which is the hardest part.

“We have an 18-month old son Charlie who is able-bodied and we are at a stage now that she is questioning why am I different mammy and will my broken legs be fixed soon?

“She has been a warrior through everything, I could be dying with a flu feeling sorry for myself and she is going down for brain surgery waving at me.

“She has anaphylactic allergy for dust and is allergic to grass and flowers. She also has a nut allergy, so you have to vigilant all of the time.”

Despite Bettystown Beach being on Abbie Rose's doorstep, the little girl could not enjoy the amenity during lockdown and whlie previously her exhausted mum Denise made a 40km round trip to Clogherhead Beach in Co, Louth where beach accessible wheelchairs were available, this was not possible with restrictions.

"During lockdown we could only travel 5km and she can't go on a beach with her wheelchair and Bettystown don't provide any beach friendly ones, having it right on your doorsep and not being able to use it is cruel.

"Normally I'd bring her to Clogherhead Beach while they have wheelchair buggies but that was off limits in lockdown.

"I've been told by local councillors that Bettystown will be getting these wheelchairs suitable for the beach but how long will that take?"

It was discovered at Denise’s 20-week scan that her pregnancy was not going according to plan as the mum of two explains:

“They knew there was something wrong, so I had to get the Amniocentesis done and they told me that it was either going to be Down Syndrome, Spina Bifida or Edwards Syndrome.

“I had to wait ten days for the results to come back, it was horrific. They found out it was Spina Bifida and I had to go and meet the neurosurgical team in Holles St, and they did the full run over of what her life would be like and what to expect.

“I had never even heard of Spina Bifida before.

“I ended up having an emergency section and Abbie Rose was sent to Temple Street two days later to have her spine closed.

“She had nine brain surgeries in the space of ten months, they removed bones from the brain, hoping things would improve but it didn’t work.

“Ever since then we have been having turmoil with the shunts because the CT scans and MRIS have never showed up anything, so I had to fight for them to operate on her to see what was wrong.

“Shunt symptoms are fatigue and vomiting but Abbie Rose has never had those symptoms, I just know by looking at her there is something wrong.

“When the catheter or the tube breaks or blocks there is no way of knowing it unless you operate.

“It’s hard having to fight all of the time, I know to them she is only a number but she’s not that to me, she’s my world.

"With not working and giving up your whole life to care for your child and getting very little help from the government is very frustrating.

“It’s heart-breaking that any minute of any day you could be back in hospital handing her over again and hoping that they don’t touch off a nerve that could do more damage.

“She is an outgoing, confident, bubbly little girl. She’s the happiest little girl you’ll ever meet.

“She is just a ray of sunshine into our lives. She makes us realise what’s important and what’s not.

“She deserves a chance like everybody else.”

A spokesperson for Enable Ireland said:

Enable Ireland in Meath provides early services to children up to the age of 6 in partnership with the HSE. Once they reach the age of 6, children are then referred on to the HSE 6-18 team.

Unfortunately, we are not funded at present to provide service to children older than 6. We know this can be a difficult period of transition for families and we work with families and children to support them as during transition.

The way disability services are delivered in Meath and across the country is changing under the HSE led national programme called ‘Progressing Disability Services for Children and Young People.’ The aim of this project is to achieve a national unified approach to delivering disability health services, so that each child has a clear pathway to the services they need regardless of where they live, what school they go to or the nature of their disability or delay.

The HSE said:

"The HSE do not comment on Individual cases. However the current position is that services delivered in Meath and across the country are changing under the HSE led national programme called ‘Progressing Disability Services for Children and Young People’. The network teams are currently been established and there is a robust national plan for roll out of the children’s disability network teams in line with progressing children’s disability policy. The H.S.E with Enable Ireland will work to ensure the best possible outcomes for all children in receipt of services in Meath."