THE Carlow parents of a baby with a rare condition have told how they are facing an agonising wait to bring her home from hospital.
Five-month-old Evie Nolan has a rare condition called cystic hygroma on the left side of her face, causing it to swell and fluid-filled sacs to form.
The child’s airway was compressed and she had to undergo an emergency tracheotomy at birth. Evie cannot breathe by herself or cry out because of the tracheotomy and needs round-the-clock care.
Due to her complex needs, parents Ciaran and Katie still haven’t been able to bring her home to Co Carlow.
The baby is in Our Lady’s Children’s Hospital in Crumlin in Dublin and cannot be discharged until a home care package, including specialised equipment and a nurse to care for Evie seven nights a week, is in place.
Her parents have been staying in the Ronald McDonald house to be near Evie, forcing them to be away from their older daughter Aila (6).
Mother Katie explained that delays in finding a nurse meant the family were left in limbo.
“Unfortunately, the agency doesn’t have enough nurses to cover our homecare package which is extremely disappointing as the package was out to tender, highlighted as an immediate start,” she said.
“It’s not known how long this will take. We have been in Crumlin since last December 5 and we’ve been waiting to go home for weeks now and just when we thought we were close it has again been put on hold.”
The baby’s condition was diagnosed when Katie was 20 weeks pregnant and doctors warned that Evie might not even survive to birth.
Evie is now receiving sclerotherapy treatment at present and doctors hope to start her on a drug called Sirolimus.
However, this will be very tough on her immune system and may result in more hospital stays.