Irish mother on the health system that’s failing her child

"She has been robbed of dignity and safety."

Louth native Katie Healy Nolan lives in Cork with her husband David and their children Penelope, 4; Teddy, 2; and Rupert who's three-months-old. A full time carer for the daughter she affectionately nicknames P, Katie has been tasked with battle after battle to secure adequate support for Penelope whose rare health condition requires round-the-clock care. Today, Katie is speaking out about the Irish health system that's failing her child, and many others. Explaining how it all began, Katie says: "Penelope was induced early. I had noticed a decline in movements. She never really kicked like you read in the books. I felt a mild tremor, that was about it. Any time I mentioned it in the hospital I was told it was fine. When Penelope was born, everything seemed ok, as Katie recalls: "We spent our first night together establishing breastfeeding and me kissing her silken little head." Soon, a mother's instinct told Katie that something wasn't quite right. "My worries started that night. Her feeding was strange; perfect one moment, colostrum dripping out her mouth the next. She would simply forget to suck." On Christmas Day 2016, Katie and Penelope were discharged from hospital as normal, but Katie's concerns remained. "The day of her heel prick test, I asked for a doctor to assess her. I was worried about her head and feeding. I was met with indifference: 'First time mum?' — A statement used to dismiss valid questions." Undeterred, Katie continued to question things. "When P was two-weeks-old, I spoke to my GP — a truly kind and brilliant doctor. He listened and agreed he could see what I was talking about. He wrote me a letter to have her seen privately by a professor in Dublin. Again, Penelope received a clean bill of health. "For peace of mind we were referred to a prof here in Cork.  On our first meeting, things seemed fine. To be sure, we met again three weeks later. "I attended the appointment alone. After assessing Penelope, Prof asked me to call David. An MRI was set up for the next morning and a plethora of tests." For the next two years, hospitals became the family's second home as they searched for answers about their precious girl: "Relentless appointments; bad news after bad news drowning us. MRIs, CTs, bloods, microarray, lumbar punctures, ultrasounds, cardiology, Physio, OT — the list goes on. On Christmas Eve 2018, a day after Penelope's second birthday, the family finally received a diagnosis. Penelope has a life-limiting condition called Pontocerebellar Hypoplasia, which is described as a de novo CASK gene mutation: "Penelope's variant of PCH has only been recorded in one other child. It is progressive, and Penelope will die from this condition. Her care is palliative." Katie acts as full time carer for Panelope, who needs 24/7 assistance. "We have no HSE nursing hours. Our only nursing help is from the Jack and Jill foundation. "In Ireland, children with disabilities are monumentally failed. From lack of school places for children with additional educational needs, to children with profound physical and intellectual disabilities, left without therapies and equipment." When requesting assistance, the family have been met with excuses and closed doors, and Katie says the pandemic has added to that: "Covid has been a convenient get out of jail free card." Any assistance that's provided is hard fought, as Katie explains: "Families, who have enough on their plate, are forced to complain, to tirelessly advocate and shout loud to have their children’s voices heard. Children like Penelope who have no voice and can’t tell us what they need or where they hurt. P is four. She can not walk, talk, use her hands, eat or sit." Describing some of Penelope's medical needs, Katie says: "She is tube fed and on nine medications in the morning, four in the afternoon and and 12 at night. Any equipment she has, we bought privately, with the exceptions of three items. We’ve spent thousands of euro trying to find solutions to her seating problems. "The chair she does have she has outgrown. Her occupational therapist stopped replying to emails, so her seat has not been adjusted since November. She has grown and gained 2kg in that time, leaving her completely without a supportive chair. "She has no bath seating. It is a health and safety risk every time we wash her. She has been robbed of dignity and safety." Left waiting, the family have been forced to fund expensive equipment themselves: "To beat the HSE waiting list, we’ve bought AFOs (Ankle-Foot Orthotics or foot braces) and lymed suits (neurological pressure garments) privately, costing us thousands. We’re currently house hunting. Any house we buy will need major adaptions to facilitate Penelope as she grows. At the moment she weighs 20.2kg. Lifting her all day every day is taking its toll on our bodies. "I am currently battling with the HSE and her service providers to help us get P a wheelchair to give her better quality of life. I am met with excuses and when I do not accept that, silence. "We are not the first family and we will not be the last to face these challenges. Our story needs to be heard. Our government needs to acknowledge our struggles and help us. "The HSE need to stop holding families of vulnerable children to ransom. Allocating vital equipment shouldn’t be a game of cat and mouse. People shouldn’t be pushed to breaking point trying to give their child a happy and comfortable existence. "It’s not easy to ask for help. When we do, we’re denied it." Determined to shine a light on the inadequacies in our health care system, the Healy Nolan family's fight continues.