One family describes how the Jack and Jill Foundation has helped them cope with their seriously ill child and take care of their other four children
SUZANNE MATTHEWS and her partner, Carl Brennan, know their one-year-old daughter Annie will not live to her second birthday. She was not expected to live to her current age and some nights, as she struggles to breathe, they wonder whether she will see the morning.
She has a rare neurological condition, schizencephaly, which means she has clefts, or holes, in her brain. She has cerebral palsy, is tiny for her age, is almost totally blind and is unable to sit up unaided.
She also has up to 50 severe seizures a day, each one of which makes the clefts bigger, the brain damage worse and brings death a little closer.
Sitting in her parents’ home in Skerries, north Co Dublin however, one can see there’s a little girl behind all that disability who feels pain and hunger, who laughs when tickled and who snuggles into Carl’s shoulder for comfort as he holds her. The young couple – who have four other children – want her to live, and die, at home with them.
“At first we just didn’t want to accept what had happened to her,” says Suzanne.
“She spent five weeks in intensive care (ICU) because she was so sick and so small – 3lbs 9oz – when she was born. We were in the Rotunda where they were brilliant. After five weeks, when they got her weight up to four and a half pounds they told us she didn’t need to be in ICU anymore.”
And so they brought home a “tiny, tiny bundle”, were told to keep an eye on her seizures, do her physiotherapy, manage her medications and keep her away from infections. They needed to bring her to Temple Street children’s hospital regularly for check-ups.
Suzanne details Annie’s daily routine – how two people are needed to bath her each morning given that she cannot sit up alone. “Then she needs to be dressed and fed.” She is fed through a tube as she cannot swallow properly and could choke if spoon-fed. The tubes need to be changed and sterilised daily.
“She has floor-time then, which involves stretches and exercises for her muscle tone.”
Through the day she has eye stimulation to help encourage her vision, more physio in the afternoon and feeds, and they have to keep an eye on her breathing and seizures, as well as make sure she gets all her medication.
“It is round-the-clock, constant and, of course, there are the other kids’ school runs and that.”
It was a social worker in Temple Street who, when Annie was six months old, felt the family would benefit from the help of the Jack and Jill Foundation. “She could see we weren’t coping very well,” says Carl.
The charity provides nursing, palliative and respite home care to more than 300 families, like Annie’s, for children under four years of age with severe developmental delay.
Caroline Thomas, liaison nurse with the foundation, visited them, talked them through what they could offer, and assigned a nurse to cover 10 hours a week of Annie’s care.
“It was like a whole new world opened up for us,” says Suzanne. The couple’s world had closed in around their desire to protect and care for their seriously ill baby. “But now, well she is just so involved in our family, she takes such good care of Annie, we can get on with other things, take small breaks and just feel a bit reassured about everything.
“Having the little bit of time free has given us the space, I think, too to accept what has happened to Annie. It’s only in the past few months we’ve been able to make peace with what has happened. We wouldn’t change a thing about her now because if she was any different she wouldn’t be ours.”
The charity is, however, like many others, under grave financial pressure, with a current funding shortfall of €750,000.
If this is not bridged by the Department of Health, it will have to pull nursing care from about 100 families in January. These families’ babies will almost certainly have to return to emergency hospital care, at a cost to the State of €14 million, says Jonathan Irwin, chief executive and founder of the charity.
Irwin pleaded for the €750,000 plug at a recent meeting with the Minister of State with responsibility for disability, John Moloney, but has yet to learn the outcome.
The department said Mr Moloney “hopes to be a position to make a comment in the next week or so”.
Suzanne can hardly bear to think what would happen if the family lost the 10 hours a week they get from Jack and Jill.
“I know two things: We couldn’t cope without the nurse and I’d be so fearful we’d in the end have to let Annie go to hospital.
“I know we are on borrowed time with Annie. Keeping her comfortable now is the most important thing. She seems to struggle more with her breathing at night, and that is the most frightening time, because every time you do get frightened, you think is she going to pass on now, and you are blessed every morning she is still here.
“When God does take her we don’t want her taken from a hospital.
“We want her here with her brothers and sisters and her toys and her cot, where she is loved.”
