Parents of seriously ill twin boys are not able to bring them home from a hospice because of issues securing a home care package.
Denise (nee Nolan) from Leitrim Village and Dermot Guihen from Keadue became parents to Shay and Finn in October 2011.
The boys were born with Pfeiffer Syndrome a disorder occurring 1 in 100,000 births, which caused the under development of the midface and the skull plates to fuse prematurely causing pressure on the brain that would be fatal if left without surgical intervention. Both boys have had to fight for their lives since birth and have had over 10 surgeries each.
The Guihens have appealed to the HSE and the Government for help in securing agreement for the €9,000 monthly care package needed as they feel they are being “robbed” of the precious time they have left with their sons.
Shay and Finn spent the first years of their lives in hospital. They are currently receiving care in a children’s hospice but their parents just want them home to spend time with them and their eight-month-old brother Reilly. Denise has said there is a “ticking time bomb in their head” and every day is precious. The young boys have shunts in their brain, and their breathing is assisted by tracheotomies. The devoted parents were told that their two young boys would not live longer than three months, but the toddlers have continued to astonish everybody with their development.
Deputy Catherine Murphy raised the family’s plight in the Dáil last week. The €9,000 weekly package was agreed upon last October. And Ms Murphy explained that it had been out sourced to a nursing agency, and that from the very first week they faced “problems”.
“It was hit-and-miss and resulted in the twins being admitted to the Laura Lynn Children’s Hospice for eight weeks until a care package could be provided,” Ms Murphy said. “Five months later, there is still no sight of a care package and the parents have not been included in the process in any meaningful way.”
Taoiseach Enda Kenny, who met with the couple afterwards, said that it was the “most complex case that (the HSE) has come across in a very long time” and that they were “very familiar with it”.
“It is a case now of working with a different agency to see if it is possible to put together a proper, sustainable home care package,” he stated.