Sarah, now 13 months old, has DiGeorge syndrome, a genetic condition which has left her with a number of congenital heart defects, one kidney and a weakened immune system.
Changed woman: Maria Dorney (pictured with her son), whose daughter Sarah has been in hospital since she was three days old, now has the "patience of a saint"
Sarah has been in hospital since she was three days old and has undergone open-heart surgery.
"We have been more or less full-time in hospital with Sarah since she was born," says Maria, who also has a three-year-old son, Sam.
Maria's 13-month vigil by her tiny daughter's cot at Our Lady's Children's Hospital Crumlin has had its effect.
"Over the last 13 months I've changed. I used to be a very impatient person but I have the patience of a saint now," she says.
Plus she's not afraid to ask a question -- and that's a big change.
Like many parents new to the hospital scene, Maria was initially reluctant to ask questions of medical staff.
"At first we didn't ask a lot of questions because we didn't want to make waves. I think a lot of parents are like that when they first go into hospital with their child; they're just nervous of saying the wrong thing."
Other things have changed, too. When Sarah's illness was initially diagnosed, Maria was slow to see the doctor.
"Initially I was quite nervous about asking to meet the doctor. You feel you shouldn't impose, but at the same time there's a huge pressure on you to be your child's voice.
"You have to get over yourself and be confident and learn to ask questions without rubbing people up the wrong way."
Back then she was also afraid to leave Sarah's side in case she missed the doctor's visit. These days if she needs a break, Maria leaves her mobile number at the nurses' station along with instructions to be called when the medic appears.
Maria is no different to other parents in a similar position. For many first-timers who don't know the ropes, a children's hospital ward is alien territory.
Stresses
Now, with swine flu raging, many parents are facing the prospect of an emergency hospital visit with all the attendant stresses: childcare may have to be found for other siblings, transport organised, arrangements made with an employer.
Going to hospital with a sick child can be an extremely stressful experience, says Mary O'Connor, CEO of the Children in Hospital Ireland support group.
If it's an emergency -- as many child visits to hospital are -- it can not only be terrifying for parents and child, but leaves parents with no time to make arrangements. "Siblings may have to be brought to the hospital with you or left in the care of a neighbour," says Ms O'Connor.
That's just the beginning. If the stay in hospital is relatively short, that is, up to six days, parents seem to be able to cope reasonably well, but if it goes over that time workplace absence and the organisation of sibling care can become major issues.
"You also have the worry about what is wrong with the child -- parents can be very distraught."
Another challenge faced by parents can be getting information from medical staff. Although this is easier than it used to be, Ms O'Connor says it's still an issue.
"You still have parents who report that they have difficulty in getting doctors to give them information.
"It can be very hit-and-miss. Also parents themselves can be a bit overawed and influenced by the situation.
Frustrated
"In a stressful situation, parents cannot formulate the questions and get them out and then they can feel frustrated afterwards that they don't have the proper information."
Michael O'Mahony, a consultant paediatrician at the Mid-Western Regional Hospital in Limerick, agrees.
"About 99pc of children admitted to hospitals like ours are paediatric emergency cases. A lot of parents in this situation are terrified.
"The scenario is the child gets ill very rapidly and possibly very seriously ill. I find that sometimes parents can be so terrified they may not hear what you say.
"We try to repeat the message because we recognise that parents may block it out so it's important for parents to realise that they must try to hear what they're being told. If they calm down and listen to the news they may find it's better than they think."
Staff at the hospital have a policy of giving out factsheets which parents can peruse once they've calmed down, he says.
"In paediatrics most children get ill very quickly and acutely, and scare the wits out of their parents.
"They're in hospital for two or three days and then they get better. For most parents it is a sharp, short shock and most children bounce back after that."
It's a good idea, when possible, to write down the questions you want to ask the doctor, and to keep a note of what is going on so that you can ask informed questions, says Ms O'Connor. And if you want to meet the doctor, don't sit there by your child's bedside waiting endlessly for one to materialise, she says. Politely inform the ward staff that you need to talk to the doctor and request that a meeting be set up.
"We know of parents who've waited by their child's bedside for up to 10 hours without taking a break in case they would miss the doctor."
Mr O'Mahony agrees. "Find out what time the consultant comes around and if it is a very complex or life-threatening issue it's a good idea to ask the nurses to set up a meeting in the ward office or somewhere they can talk privately."
Don't be afraid to take a break from the bedside. Just give your mobile number to the nurses and ask them to call you if you happen to be absent when the doctor arrives, he advises.
Number
"I certainly wouldn't expect parents to sit by the bedside waiting for me to arrive," he declares. (Remember to check that they have the right mobile phone number written down, advises Maria Dorney. There's always the possibility that it may have been transcribed incorrectly.)
Entertaining a child in hospital is never easy so if your child's visit is a planned admission, decide with them in advance what they'd like to bring as regards favourite toys, blankets, soothers, books and games.
"When children are in hospital their attention span reduces so they need simple activities. Often they may feel happier playing with something for a younger age group," says Ms O'Connor.
However, one of the most important things for a child is having a parent by their side.
"It's really important that one of the parents stays with the child as much as possible. If you can't avoid an absence, try to have another familiar person like a grandparent.
"The key thing is that it's a person the child is comfortable with. If you have to go back to work or home to look after one of the other children, try to arrange for someone to be there. If you must leave for a while, tell your child what you have to do, and also be clear about when you'll be back. It's very important that you do come back when you say you will."
Always be truthful with your child -- if a procedure is going to hurt them don't lie about it, she says, but tell them that it will not last and that you will be there.
Try to do as much as possible for your child yourself, so that young children, and babies especially, learn to distinguish between you and the nurses, says Maria.
If you're going to be in hospital with your child, be sure to keep in touch with siblings at home, says Maria, who stays in the Ronald McDonald House on the grounds of Our Lady's Children's Hospital.
The facility, which has 16 bedrooms, allows families from across the country to stay close to their hospitalised children.
Maria makes regular video-calls to Sam at the family home in Carrigaline, Co Cork, and she never, ever fails to check in and say goodnight.
For More information visit www.childreninhospital.ie, Tel: 1890 252682 or email info@childreninhospital.ie
A home from home for parents
The general consensus within the health service is that the practice of allowing parents to stay with sick children in hospital should be encouraged where possible. However facilities and resources vary in different hospitals, according to a spokesman for the Health Service Executive. Here's a sample of what's available around the country.
At Temple Street Children's University Hospital, the Sherry FitzGerald 'Your Home Away From Home 2006' fund-raising project resulted in the purchase of a house on Fontenoy St in Dublin 7 for use as accommodation for families from outside Dublin. It can accommodate two families at a time and is within walking distance of the hospital. Within the hospital there are 15 rooms available to parents. And as part of the redevelopment of the hospital's neo-natal unit, in partnership with Tesco Ireland, new individual patient units have a built-in bed so that parents can remain right beside their sick infant. www.templestreet.ie
Situated in the grounds of Our Lady's Children's Hospital, Crumlin, The Ronald McDonald House is also geared towards families who have to travel to visit their children in hospital in Dublin. It has 16 en-suite family bedrooms; a room that sleeps four costs €10 per night.
McDonald's restaurants will sell Ronald McDonald House shopping trolley tokens and car stickers throughout November and December to help raise money for the charity. www.rmhc.ie
Cork University Hospital provides recliner chairs for parents of young patients in the paediatric wards. There is also a parents' room and shower facilities at their disposal.
Located within walking distance of the hospital is Bru Columbanus, providing free accommodation for families of critically ill patients, particularly children. It consists of 24 individual en-suite bedrooms and communal living areas. A counselling room, church, library, playroom, teenagers' room, five communal kitchens, laundry facilities and garden area are also available. Tel: 021 4345754 .
The Mid-Western Regional Hospital in Limerick has a modern 57-bed paediatric unit called The Children's Ark. Beds for parents are provided if required. "The unit is bright and modern. The objective is to make it as unlike a traditional hospital setting as possible," said a spokesman.
How to make their visit comfortable
- If it's a planned admission, make life easier for yourself by calling ahead and getting information about parental sleeping arrangements, canteen opening times and what the treatment will involve, eg, blood test, x-rays.
- Bring a favourite toy or blanket (no matter how scruffy) and soother or bottle (if used).
- Tell the nurse special names for food, the potty etc.
- Help with everyday care of your child.
- Don't be afraid to ask questions -- write them down in advance if you can.
- Try to concentrate on what you're being told by the doctor or nurse.
- Don't be afraid to request a meeting with the doctor if you feel it's necessary.
- Explain to your child what is going to happen during examinations and injections.
- Your child will need you especially before and after an operation.
- Reassurance and lots of love is often the most important medicine.
- Encourage your child to get involved with the other children, and in the hospital playgroup.
( @ Independent News )
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