“Most people still think of support stockings when they think of home care.” Nowadays, that’s not the only thing that can be done at home, says Heligunde van Toilert (33). She works in specialized home care and provides, among other things, home care for children with cancer or anorexia.
Its activities are very diverse. “We have a number of regular moments of care in schools. For example, a young child who has just been diagnosed with diabetes and a child who is being fed at school through a tube. These children are dependent on medication, and without us parents would have to go to school two or three times a day.” “Then there are children who receive antibiotics at home, or chemotherapy. We also support children with anorexia.” No day is the same for Hillegonde. “I can also take a call in the morning, and then be in the hospital in the afternoon to pick up a baby born at 24 weeks and I can finally go home with oxygen and a probe. I don’t always know what the day will bring.”
The fact that care takes place in the home means that Heligunde and her team treat families in a very different way than other nurses. “In the hospital, the child is, as it were, your guest. The magic of our profession is that you are literally allowed into someone’s home. You enter the family and build a bond there. Not just with the child, but with the whole family, including the dog that roams there.”
Is there no danger in taking the suffering of young patients seriously? “There is nothing more severe than a seriously ill child. Involvement is your humanity. If you don’t intervene, you will have to finish this work very quickly. I think he only shows compassion if he is doing something for you. It also ensures that you are committed to the family.”
For Hillegonde, when children die, it means that he provides not only medical care, but also direction on death. “In the final phase you are 24/7 Suspension. In addition to technical events, such as medication, you should also instruct all family members on the following, what this looks like, and what they can expect. In the hospital you have everything at hand, then you can decide to deploy a social worker or pedagogical worker. I don’t have this in people’s homes, I’m all in one. I could call the hospital, but I’m sitting there on the couch and have to do the conversation.”
Losing a child is very difficult for a family, but it is also not easy for a nurse to witness the process. Fortunately, Hillegonde benefits greatly from peer support. “It hits. You have to talk about it, or you’re going to get stuck in it. As colleagues, we all understand very well what our work involves. Lines of communication with hospitals are also short, so a lot gets evaluated, so you can vent.”
Our goal is to provide comfort
After death, a team of nurses is always invited to the funeral. “Personally, I find that very nice. It helps to close the event myself, because you’re really very involved with a family. Plus, we often have an assessment appointment at home a few weeks later. Then you can talk about how you’ve experienced the process, as a nurse and as a family. This Also part of the treatment, where you hear again that what you did was good. If you see from your profession that a child suffers a lot, it is good to see that he is at peace. Children do not have to die, but they die. Then our aim is to provide relief.”
Working with sick children when you have kids can sometimes make you anxious as a parent. This is not unlike Heligunde, herself being the mother of an 8-year-old son and a 6-year-old daughter. “I hate it when my kids have bruises or misunderstand stomachaches, when they don’t have to be anything at all. I just know too much and always see the completely wrong cases, and it doesn’t help. I think every pediatric nurse has a little bit of that.” “For something bad to happen to you as a family seems very difficult to me, because I see what happens to the whole family. You don’t wish that on anyone, not even yourself.”
This does not mean that she visits the doctor with her children every week. Heligund believes that it is important to have a positive attitude towards life. “I often say: ‘I don’t think we should complain, because we’re doing really well.’ I have a very positive outlook on life. You can think about what you have, because I’m sure many families would also like to be like us.”
My daughter was very ill
Heligund knows what these parents are going through. “The youngest was born prematurely and ended up in the NICU (neonatal intensive care unit). She was deathly ill, you don’t lie there because your toes are sweaty. This experience helps me personally to understand why someone, for example, would give the reaction that Give it. If you’re under a lot of stress because your child is sick, you’re not always the nicest person, not even to the nurse. Because I’ve experienced that myself, I can talk to parents on a different level.”
Hillegonde blogs about her work as a “little sister” on Instagram. You do this mainly to show how much more is possible in home care. “When you say ‘home care,’ probably 90% of people think about wearing compression stockings. A lot of people don’t know what other forms of home care are. I think it’s important that they know that, and then start thinking about the possibilities themselves. The child heals. Faster in his own position, at home, on the couch, with the dog around him. It’s been scientifically proven. Ten years ago, we couldn’t have imagined giving chemotherapy at home. It’s not always possible nowadays, but there are some chemotherapy treatments that can Doing it at home. Sick children are already in the hospital a lot, if certain things can be done at home, we should strive for it.
Hillegonde certainly didn’t choose the easiest profession, but when you see how many children have made a full recovery, it helps her persevere. We also often see a good result. I often ask parents who we know therapy is over to share something about their child, even after a long time. This is very important to us, otherwise we would only see that it does not end well. A lot of parents do too, and then you know: that’s what we did for him, that kid is just a kid again. “
Health Care Worker of the Year
Health Care Worker of the Year
Which topper care always goes the extra mile? He nominated her for the “Care Worker of the Year” election.