The Jack and Jill foundation helps parents of severely brain-damaged children, writes Sheila Wayman
There is no doubting that two-year-old Sinitta Holland is daddy's girl. He cradles her in his arms on the sofa in the front room of their end-of-terrace Tallaght home in Dublin, chatting to her playfully and stroking the mop of red-brown curls that stretch down the length of her back.
But the grey-blue eyes that he looks lovingly into don't see him. She doesn't hear his voice either, or respond to his touch.
"I believe she gets comfort from it but I don't think she knows what's going on," says John Holland (26). "She used to give a reaction when she was younger, but now it's all gone."
Her little body is convulsed in seizures most of the time, punctuated by high-pitched cries. This is one of her better mornings, with shorter seizures and no vomiting of blood.
Her mother, Siobhán (25), dabs cream on the side of her face that was burned by stomach acid when she was vomiting yesterday.
"It just has to touch the skin and it burns it. Even if we're standing beside her and wipe it off straight away, you can see the blisters coming up," says John. The smooth, peach complexion of the other cheek contrasts sharply with the damaged one.
The pregnancy and birth of their second child had been "perfect". But soon after Siobhán took her newborn daughter in her arms she just knew something was wrong. She kept saying to John, "she isn't right, she's floppy".
Within three hours, baby Sinitta had been taken away to the intensive care unit. Her parents say medical staff did not know initially what was wrong, but later said she was having seizures. Weeks and months of investigations followed but no definite medical diagnosis of her condition was made.
"A very rare condition," reads her medical report, "similar to the syndrome Malignant Migrating Partial Seizures in Infancy".
The medical label put on Sinitta really has little relevance. Her parents have been coping with the reality of her day-to-day needs since taking her home for the first time from hospital when she was nine months old.
"They told us if you take her home she could die any day and we said we'd face that fact and deal with it," says Siobhán.
Two years later they are still nursing their daughter around the clock, never knowing if their "princess" will be with them the next day. Every morning they wake up, hoping that she's still there.
"Every day is a bonus," says Siobhán. Meanwhile, they must ensure her six-year-old brother, Scott Lee, has as normal an upbringing as possible.
"He's fine as long as he has the attention of one of us," says John. Although they are only in their mid-20s they have decided not to have any more children. They say a genetic cause of Sinitta's condition was ruled out but medical staff cannot guarantee another child wouldn't be affected.
"I am not going through this again," says John. About three months after Sinitta came home, he gave up his job in the dispatch department of Guinness to care for her full-time.
"It became impossible to work. I was getting to the stage where I was going to fall asleep at work or I had to give up."
Every night he is in and out to the tiny bedroom where his daughter lies in a medical bed that is padded to protect her during the almost constant involuntary movements of one seizure after another.
"She spends around 90 per cent of the time seizing," explains John. "I can go days without sleep by now. If Sinitta is awake, I'm awake."
Siobhán, who works part-time for Capital Cleaning Services, says she's "hitting the roof" when she doesn't get sleep so she leaves the night shift to John and lets him catch up on sleep when he can during the day.
Their day starts at 6am when John gives Sinitta medication she needs up to an hour before any feed. Four times within every 24 hours she is hooked up to the machine on her bed which pumps liquid feed through a peg in her stomach for up to two hours.
At 10am and 10pm they administer anti-seizure drugs. Only occasionally do they give her a strong sedative to make her sleep, "when she's really, really bad and she is getting distressed", says John. "We wouldn't give it to her just so we could relax." He is fiercely independent and protective of his daughter. "She is mine and it's my responsibility to take care of her," is how he sees it and is resistant to outside help other than immediate family.
But being persuaded about a year ago to contact the Jack and Jill Foundation, which supports parents of severely brain-damaged children like Sinitta, was a turning point.
With 287 children on the foundation's books, a team of 10 liaison nurses is deployed around the State to assess and advise families. The foundation also pays towards respite care, according to the needs and particular situations of the families. It listens to what the parents want.
"There is no point in telling people, 'this is what we are giving you'. That is what is different about us," explains Jonathan Irwin, founder and chief executive of the foundation. "You are going in at a traumatic, wretched time and you can't lecture families."
He knows what he is talking about, from first-hand experience. On February 29th, 1996 he and his wife, Mary Ann O'Brien, had a healthy baby son they named Jack. But two days later in the maternity hospital he suffered some catastrophic episode, which left him severely brain-damaged.
The senior paediatrician in the hospital was brutally honest in advising them on Jack's care once he was discharged from the intensive care unit. The overwhelming needs of the baby would threaten their marriage and damage the childhood of his older brothers and sister, he warned.
The best thing to do, they were told, would be to take him home and then get him admitted to one of the children's hospitals and effectively abandon him there. Then and only then would the State have to take responsibility for him.
It wasn't advice that Irwin and O'Brien took. Instead they kept Jack at home, where he died 22 months later, having lived what his father describes as "a fairly desperate and painful life". But his suffering was alleviated in some way by the round-the-clock nursing he received from a dedicated band of carers and a nurse from the neighbourhood.
It is this model of care that the Jack and Jill Foundation was set up to provide. More than 10 years later, there is still no national homecare budget for these "most fragile of all children", explains Irwin, "they have money to keep them in hospital."
One improvement is that these children are now entitled to a domiciliary care allowance once they are diagnosed. In Jack's time they were not eligible for such a payment until they were two because, as a senior civil servant explained to Irwin, the State thought such babies would die before then.
Now the foundation is pressing for the automatic granting of a medical card to any child who qualifies medically. At present parents have to go through the bureaucracy of being means-tested before a medical card may, or may not, be given to the child.
The foundation takes on only severely brain-damaged children up to the age of four who need 24-hour care, "children who will never recover", says Irwin.
It runs its services on a budget of €2.6 million a year, less than a fifth of which comes from the State. While the Minister for Health, Mary Harney, has been very positive about the foundation's work and has promised she will go 50-50, says Irwin, HSE funding to Jack and Jill has fallen from 25 per cent to 18 per cent during her time in office.
To families like the Hollands, the Jack and Jill Foundation offers very practical support.
"They don't patronise you," says John. "They give you good options and don't just say 'this is what you get'."
The Hollands use money provided by the foundation to contribute to family members, such as his mother Carmel, who take time off work to care for Sinitta or take her overnight.
John and Siobhán have trained a few key relatives to care for her, rather than availing of hours of professional nursing. This is what works for them, as John finds it hard to let anyone else care for his daughter.
"I know how much nurses care for the kids but they can't give the same amount of care as the family does."
He thinks the State should offer more help to parents like them, "but I wouldn't take it", he smiles. "We are kind of lucky that we've got family who will come in."
However, they have been waiting for one and a half years for proper physiotherapy treatment for her. "They offered us 10 minutes and it was going to take half an hour to get there and half an hour to get back so I said I would do it myself," says John.
In the first few days of Sinitta's life he quickly adjusted to the way she was, but for Siobhán "it took me about a year to accept it, I was in denial".
He says that she "still has it in her head that Sinitta is going to get better. I think it's harder for mothers than it is for fathers."
He is totally philosophical and practical about the situation they are in. Although before Sinitta's birth, he says, "I would never have imagined myself being able to deal with something like this."
The one thing that really annoys him is strangers staring at his daughter and people coming up to offer their sympathy.
"I don't believe Sinitta is a sympathy tool. The way I look at it is, that's Sinitta. I don't look on her as a disabled child.
"To people on the outside it's not normal, but to us it's normal," adds John.
As Irwin says of children being helped by the Jack and Jill Foundation, "even if they can't talk, can't walk, can't do anything, they steal a part of their parents' hearts".
You only have to walk into the Hollands' home to see proof of that.
• Paediatric nurse Sinead Moran has 44 severely brain-damaged children on her books, and in any typical day she might manage about three house visits as well as being available on the phone to give information and advice.
During those home visits she will often encourage parents to get out of the house for a break while she is there attending to the child's nursing needs.
She is one of 10 nurses working for the Jack and Jill Foundation, and one of three in the Dublin area. A native of Mullingar, she trained as a nurse in Drogheda and then specialised in paediatrics at Temple Street Hospital, but she always wanted to work in the community.
"Most parents who have sick children want them to be at home. The aim is to get them out of hospital and have them nursed at home."
On the day we spoke, she started with a home visit to a child recently out of hospital.
Then she went into Temple Street Hospital to see two of her regular children who are in for treatment - infections are a hazard of this time of year for these very vulnerable children.
She also saw a new child in the hospital who has just been referred to the foundation. He is going home next week and she needs to organise nursing care in the home for him.
The foundation can offer a maximum of 80 hours nursing care per month for the most severe cases up to the age of four.
About a year before a child reaches that age milestone, the foundation will be on to the HSE to say it is due to pull out of the care of that child and the nursing hours need to be replaced.
However, Moran points out that she still has two children who are nearly five and the HSE hours have still not been secured for them.
Sinitta Holland is one of the children in Moran's care.
She says John and Siobhán are exceptional parents and what they cope with day to day is quite incredible.
Recycling of mobile phones provides the largest chunk of revenue for the Jack and Jill Foundation. It is hoping that many of the estimated 25 per cent of people who changed their phone at Christmas will send their old ones on to the foundation through the freepost envelopes that are available at various outlets
For more information, tel 1850 525 545. Also visit www.jackandjill.ie