THE FIRST time our eldest son had febrile convulsions late one Saturday night, we thought he was dying in front of us when his face turned blue.
As I held him in the back of the car speeding to hospital, talking continuously to his limp and moaning body, I was convinced he was at least brain damaged. Such panicked introductions to children’s hospitals are not uncommon. If we, the parents, are terrified, imagine what it is like for the child.
That is why parents of all children are being encouraged to familiarise their children with the idea of hospitals – just in case.
Mary O’Connor cannot count the number of times she has been standing outside a supermarket handing out leaflets about preparing your child for hospital and somebody has glanced at the title, said “God forbid” and walked away empty handed.
“The attitude is ‘if I don’t talk about it, it won’t happen’,” she says. But, as director of Children in Hospital Ireland (CHI), she advocates playing “hospitals” in a positive and fun way with every child, from as early an age as possible. There is no shortage of “dress up” costumes for little doctors, nurses or paramedics, and many children’s books on hospital-related themes are available too.
Every year there are more than 270,000 child visits to hospitals in the Republic. Some 150,000 of these involve, on average, a three-night stay.
When the visit is planned, there is time to prepare. However, of the 75,000 children under four who are admitted to hospital annually, the majority come through unexpected trips to AE departments. While physical scars of hospital treatment may be unavoidable, the last thing children need is psychological damage from the whole experience.
“When children go into hospital, it is the first time they realise parents can’t protect them from everything and how that is managed is very important,” says O’Connor.
She got a phone call from a mother who had carefully prepared her child for a stay in hospital. But when she arrived with him, it was she who had a panic attack when the smell of the place triggered a hitherto forgotten memory of a bad hospital experience she had had as a child.
“We want to make sure that does not happen with the next generation,” says O’Connor.
CIH has been working since 1970 to help children and their parents cope better with hospitalisation, providing advice and information. It now has a national network of up to 450 “Play Well” volunteers, providing playtime in 17 of the Republic’s 26 hospitals that treat children, and acts as an advocate for the rights of children and their parents.
It all started in the Letters pages of The Irish Times in the autumn of 1969, when Patricia Hemmens of Malahide, Co Dublin, responded to a news story about how a survey of children in a Dublin hospital had found little was being done to meet their emotional or educational needs. It was a time when some parents were not allowed to visit, never mind stay with, their hospitalised children.
Recalling the story of a mother who was told she should not visit her little boy at all “because it only upsets them”, Hemmens asked if anybody was interested in starting an Irish association for the welfare of children in hospital.
Days later she wrote to the paper again, questioning people’s values when an article by Maeve Binchy on the “nonsense of etiquette” provoked a flood of letters from readers, while the issue of children in hospital was ignored.
“Have we become such an affluent society that which knife and fork we use matters more than the type of care we provide for our children?” Hemmens asked.
Such questioning of priorities had resonance on a recent visit to Our Lady’s Hospital in Crumlin. At the end of the corridor in St Brigid’s ward is a small but airy playroom, the pale blue walls decorated with a huge mural of Winnie the Pooh, Piglet and Tigger, where two pale-faced children are immersed in paints and glitter, with the help of CHI volunteers.
This 25-bed ward used to be for cardiac patients only but since the recent controversial closure of St Joseph’s ward, there are orthopaedic cases here too. The children housed in the ward’s 10 isolation rooms cannot go to the playroom so the play volunteers, or the ward’s play specialist, go to their bedsides instead.
Depending on the nature of their condition, children can be here from three weeks to three months, while for some it might be more than a year.
“Socialisation with other children is very important,” says O’Connor. “Even when children are quite ill, they need that possibility of socialisation. It is very easy to get institutionalised and withdrawn.”
The sight of children lying weak on beds in the clinical, cramped surroundings is the polar opposite of what childhood should be about. But the children don’t complain, says CHI volunteer Ciara Skehill (26) from Ballinteer in Dublin. Self-employed in the music industry, she takes time out to come to the hospital every Wednesday morning.
“In two years I have never heard moans from the children. They just want to come down to the playroom and have fun and leave the illness in the bedroom. They don’t say what’s wrong with them. They just want to forget about it and play.
“I think that is why they heal so much quicker than us. They don’t dwell on it,” she says.
Some friends were surprised at her becoming involved with CHI because she does not have children, however she clearly adores them.
Volunteers are required just to be over 18, have a desire to help children and be able to give at least two hours a week. After reference checks and Garda vetting, training is provided before volunteers are assigned to the hospital of their choice.
Retired speech and drama teacher Marie Logan, from Raheny, is another volunteer who comes every Wednesday. She feels strongly that parents should teach children about hospitals as part of everyday life.
“The odd time you see children frightened,” she says. But there has been a vast improvement since her childhood, she points out, when it was common to hear children being told, if they did not behave, the doctor would come with a big black bag and take them away.
Even today, well-meaning parents who don’t want to worry their children, tell them they are going on a shopping trip when in fact they are off to hospital. It’s a terrible breach of trust, says O’Connor, who began as a volunteer with CHI in 1984 and has been director for the past 10 years.
Parents are advised to explain, in a simple and age-appropriate manner, what is likely to happen. Be cheerful, reassure them the doctors and nurses can make them better and that they will be coming home, but also be truthful.
“Don’t say it won’t hurt,” says O’Connor. “Because the first time it does, you will be a liar.”
The arrival of the volunteers on the ward, dressed in distinctive red bibs, is also a welcome sight for parents who are constantly at their children’s bedside.
They can go for coffee or take a shower, knowing their child will be happily occupied for a while.
Skehill says the youngsters she has met in the hospital have taught her so much. “What I learn from them is a huge sense of positive thinking.”
Seeing what these children have to go through, at a stage in their lives when they should be carefree and bursting with energy, puts the rest of life in perspective.
“Sometimes I go out of here and a friend rings,” she adds. “They’re in a bad mood. I ask why? Because of the weather, they say. I just want to smack them!”
Play helps normalise their lives
BEFORE CHILDREN undergo cardiac surgery in Our Lady’s Hospital in Crumlin, they are always introduced to Mary on St Brigid’s ward. She doesn’t say much but she is very reassuring.
Mary is a doll which play specialist Olivia Fallon uses to show children what they will look like when they come back from theatre. She has a cannula, or small tube, inserted in her hand for intravenous fluids or administering medicine, and is wired up for monitoring equipment.
“They can look and relate to this doll that has the same things as they have,” explains Fallon. She recalls how one little girl who returned from surgery with two cannulas (or “Freddies” as they are known to the children) was adamant that Mary should have a second one inserted.
Fallon, who is originally from Roscommon, is one of nine play specialists working in Our Lady’s Hospital, Crumlin. Preparing children for different procedures is part of their job, as is being there to distract them while some of those are carried out.
“They see you as someone they can trust,” she explains. “We come down to the kids’ level in the age-appropriate language that we use. They see us as someone who they can talk to, who can explain things to them and at the same time we are there for the fun.”
Fallon has helped to develop a website aimed at children aged eight to 12 who are to undergo heart surgery, called www.heartsplay.ie.
“It has the story of when you come into hospital, when you go down to ICU and when you come back.”
She sits down and goes through it with them on a lap-top computer.
Another part of the preparation is introducing them to other children on the ward who have already undergone cardiac surgery so they can ask them questions.
Fallon’s work ranges from activities in the playroom to one-on-one work at the bedsides. The back-up she receives from the CHI volunteers gives her a chance to get around to more patients.
“I don’t have any here on a Tuesday and I miss them. They are great to play with the kids, help out with the playroom and give the parents a break,” she explains.
It means she does not have to be confined to the playroom and has time to do her specialised work. If there is somebody on the ward she is not going to get into that day, she can ask a volunteer to go instead.
The hospital ward is an insulated community, where time seems out of step with the rest of the world. Fallon helps children devise timetables, to give their days some structure and routine.
She might let them schedule special one-to-one time with her in the afternoon, which is all about giving the children choices and some independence.
“They lose all that when they come here. The nurses come in and give them their medicines and they have to take the medicines whether they like it or not. And that is a big struggle as well.
“You will find when the kids come back from surgery they don’t want to take the medicines; they have had enough and they just want out. You work a lot with them, trying to encourage them. You might build up star charts around it but giving the child the control; they would write a list of things they would want to do.
“It is all about talking to them in the right way,” she says. “Encouraging them and acknowledging how brave they are. It is a big deal for them.
“They have come for big surgery and here they are, they have struggled a lot, they are down and their routine is messed up. You are trying to normalise them and that is why play is so important because it normalises their routine.”
For many children returning to the ward from ICU after surgery, the first thing they want to do is to get into the playroom. “We would encourage that. The sooner they get back to normality, it helps to speed up the recovery time.”
It is not uncommon to have a child in an isolation room for more than a year awaiting a transplant. One girl has recently gone to Great Ormonde Street Hospital in London for her second heart transplant.
“She was stuck to a machine, she couldn’t move,” Fallon explains. “Everyday she would look for me to go into her. If I was off for a day, she would be saying ‘where were you?’. It was her fun time, to have a bit of play instead of looking at the TV the whole time.
“We were all very upset because we thought she wasn’t doing so well but she did get her transplant and she’s doing good so far.”
They are looking forward to having her back in the ward as part of her rehabilitation before she goes home.
“She is just an amazing little girl,” Fallon adds. “She never gives out about anything and she has been here the whole of her life.”
Preparing for hospital
- Talk about hospital as a cheerful place where doctors and nurses help to make people better.
- Play doctors and nurses.
- Read hospital stories.
- Check in advance with the hospital about overnight arrangements and try to be with your child as much as possible during the stay. If necessary, ask relatives and friends who your child trusts to help out.
- Ask the doctor about the treatment to be given so you can tell your child what to expect, in as simple and cheerful a way as possible.
- Explain procedures such as X-rays, injections and blood tests, in a truthful way.
- Reassure your child that doctors and nurses know how to make him/her better and that he/she will be coming home.
Source: Children in Hospital Ireland
For more information on Children in Hospital Ireland, log on to www.childreninhospital.ie or tel: 1890- 252682
