THE PARENTS OF the only twins ever born in the state with Pfeiffer syndrome have met with the Taoiseach to discuss getting their boys home.
Denise and Dermot Guihan are the parents of Shea and Finn who have been in hospice care for the past five months.
A 24-7 care package was agreed last October that allowed the then 18-month-old boys to leave Temple Street Children’s Hospital and go home.
However, problems with the outsourced nursing agency resulted in the twins being admitted to Laura Lynn.
The boys were meant to stay there for eight weeks until a healthcare package could be provided but five months have now passed and the boys are still there.
Denise told TheJournal.ie that, “It’s imperitive that we get them home ASAP.”
Dermot added: “We have a 9-month-old who wants his brothers and we need them all together to be a family unit of five.
We’re not going to give up on them, they haven’t given up on us.
Speaking about the meeting with the Taoiseach, Dermot said: “We’ve come out of that meeting feeling very positive, we believe he will do something and he will help us get our children home where they belong.”
Genetic Disorder
Pfeiffer syndrome is a genetic disorder characterised by the premature fusion of certain skull bones.
This early fusion prevents the skull from growing normally and affects the shape of the head and face.
The boys have survived 21 operations to date.
Speaking in the Dáil this afternoon, TD Catherine Murphy asked the Taoiseach to review the homecare packages.
She said, “This is not about money, it’s about how the process is managed.”
The Taoiseach Enda Kenny replied:
I’d like to see that when we have Finn and Shea with us, the best possible outcome is achieved.
He added, “The HSE are familiar with this case… They are willing to meet with the parents to discuss this.
I do hope the outcome can be the very best for two little boys who need nothing but the best.
Care
Murphy said, “It’s a life and death situation… There has to be continuity of care.”
She also highlighted that there are other families out there in a similar situation but who don’t want to rock the boat.
“There needs to be a look at this home care package. I don’t believe it’s about money, it’s about how the care is provided.
This can’t be delivered on an agency basis. Sometimes outsourcing means outsourcing of responsibility.
“Every day this couple face both the joy and sorrow of being the parents of these two boys, Finn and Shea.
“The sorrow for the parents is that they know for a fact their childrens lives will be limited but they shouldn’t be limited on the quality of their lives.
Kenny said “24-hour care is required here…what we want is the very best of care”.
The Taoiseach said that he would contact the Minister for Health and the HSE about the case.
After meeting with the Taoiseach, Denise Guihan added:
We’re delighted that he’s interested about this case…we just hope that level of interest continues until it is sorted out so we can have our boys home.
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