Parents appeal for essential feeding tube operation for their terminally ill two-year-old daughter
Maebhe Gorman was diagnosed in Temple Street in late 2023 with M.L.D, a rare inherited disorder affecting mainly the 'white matter' of the brain, causing a progressive loss of physical and, later, mental skills.
“It is fundamentally wrong that in 21st century Ireland, a terminally ill baby has to suffer the way that Maebhe is suffering.” These are the words of the parents of a terminally ill two-year-old girl who are appealing for help from the health service and local TDs for her to get an essential feeding tube operation so that “she can smile while she still can” and have some quality of life.
At the moment Maebhe Gorman is being fed by a ng tube which can be easily pulled out and frequently needs to be repositioned while taped to her face, which restricts facial movement and leaves her open to many risks. The family is fearful she will not survive long enough to make the top of the waiting list for a vital peg feeding tube.
This is just one of the many heartbreaking issues facing her family who moved from Dublin to Carrowmore in the Roscommon/Galway constituency in order to raise Meabhe and her old sister Tina in the country. Born in September 2021, Maebhe appeared to be developing normally until the age of nine months. At this point she began to miss developmental milestones. Clinical and medical interventions then began.
She was diagnosed in Temple Street in late 2023 with M.L.D, a rare inherited disorder affecting mainly the 'white matter' of the brain, causing a progressive loss of physical and, later, mental skills. As M.L.D is so rare, the neurologist was surprised by the results and her family was unaware of the disease and prognosis.
Neurologists in Temple Street indicated a probable life expectancy of a further three years, with the added caveat to treat every Christmas as her last.
Her parents John and Veronica told the Herald: "Maebhe was diagnosed with Metachromatic Leukodystrophy on November 6th, 2023. We are still absolutely devastated by the diagnosis. We are living in a nightmare.
“We are stunned by the speed at which this disease has progressed. In the space of three months she declined from a seemingly normal baby to a very disabled baby. We are heartbroken beyond words that every morning when she wakes up, there is a little less of her there than there was when she went to sleep. Every day brings a different challenge for Maebhe and our family. She is now on a lot of medication to try to manage her pain and seizures. She requires full time care, and this is obviously very difficult for us as a family, and especially for her four year old big sister Tina, who does not really understand what is happening.
“She needs a hospital cot for home, so that she is not lying on a mattress on the floor, she needs a car seat so that she can travel safely in the car. She needs a modified vehicle. Most urgently, she requires an operation to insert a peg for feeding and medication. She is being fed via ng tube right now, but it is difficult to manage. It is not very practical, and it means we are almost housebound to allow for the cleaning of the tubes, and the feeding schedule. It also means that she is at risk of aspiration, which is a huge risk factor for babies with MLD. We do not understand why she was not placed on the waiting list for her peg operation when she was diagnosed in November. As it is, she has an 8 to 9 month wait for the insertion of the peg. The ng tube may be serving a very basic function of providing her with nutrition but it greatly reduces her quality of life, and increases the risks to which an MLD baby is most susceptible. She may not even survive long enough to make it to the top of the list.
“It is not possible to put into words the pain of losing a child. We are acutely aware that our time with Maebhe is limited. We are grateful every day that she has survived another day, but also aware that each passing day brings us closer to the day when she closes her eyes forever.
“There are no positives in this situation. We have begged and pleaded with the HSE to fit Maebhe with a peg so that she will at least have fewer preventable risks for the remainder of her life. We have contacted politicians, the Children's Hospital Ireland Group, and the government. Everyone denies having the power to change her situation, The truth of the matter is that the only one here with no power is Maebhe.
“It is fundamentally wrong that in 21st century Ireland, a terminally ill baby has to suffer the way that Maebhe is suffering.” Her aunt Susan Gorman also said :“We are doing everything we can think of to get everything that Maebhe needs. However, we are not having much success with obtaining equipment from the HSE. She is rapidly declining. She needs help and comfort in her life, and she needs it now.
“She will end up in vegetative state, blind and deaf. Right now, she is spending her days (when not in her parents' arms) on a mattress on the floor of the kitchen.
“The most tragic part of her story is that her death is entirely preventable. She is needlessly dying. There is a treatment for her illness (Lebmeldy), but the Government refuses to test for MLD. Her illness tears her limb from limb, invisibly and insidiously.” She has called for the illness to be included in the screening of newborns as it is in many other countries. “The is treatment but you have to get it before the symptoms start showing. The Catch 22 is only when symptoms start showing do people start looking to see what the cause is.” A number of fundraisers have been held to help raise funds for Maebhe and her family. A gofundmepage has also been set up. Search Queen Maebhe, Our Baby Warrior to find out more.
