How to Cope When You Have a Child with Health Issues

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This article focuses on how parents can cope with their children's health issues. It has been based on my personal experience of caring for my ill child and in no way should it be seen as professional advice.

Submitted: July 24, 2015

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Submitted: July 24, 2015

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As I pack my hospital bag and that of my 3-year-old toddler, for possibly the tenth time since she was born, I begin to feel anger and frustration building up inside me, not at the thought of spending yet another week in hospital, but at the fact that I was unlucky enough to bear a child with health complications.

Why did this have to happen to me? I find myself feeling jealous of other family's lives whereby the parents can just drop their children in a crèche (also known in some countries as a daycare centre) or employ a babysitter to be able to return to their jobs, a year or so after the birth. I find myself jealous that we cannot just book a family holiday and jet off to Spain every year, but rather have to live day by day without planning as much as a week or month ahead.

When parents have children with health issues they worry about whether there's light at the end of the tunnel, an end to the ongoing hospital stays or daily medications. In my daughter's case, who at birth was diagnosed with a bowel disorder called Hirschsprungs Disease, I am still wondering whether she will always be dependent on me to pass proper bowel motions, even following a five-hour operation when she was only four months old. The surgery was required to remove part of her malfunctioning bowel in order to enable her to pass stools. Unfortunately, she was one of the few patients who still suffers from severe constipation. I will not go into detail about the care involved in managing this disease as that would merit an article of its own, but I just want to give you an idea of what I am going through in order for you to understand the motives behind my article.

In my opinion, even though relatives and friends really worry and care about your son or daughter it is only people who have children with health problems who can really empathise when they meet an ill patient and his/her family. So this is why my first word of advice is to meet other parents who are also looking after a child with an illness (ideally the same as the one you are battling with) either by joining social groups in their area or I guess that, more realistically speaking, joining online forums and communities that support the disease or illness in question.

By no means am I saying that you should take medical advice off people on the internet as only your child's medical practitioner can advise you on what's best for your son or daughter, but these online websites will offer you emotional support and possibly ideas about managing your child's condition that you can suggest to your doctor.

There is no harm in looking up medical information on the internet just for the purpose of gaining a thorough knowledge and understanding of your child's illness, but please do not read too much into this, for example, medical journals, as not all the complications mentioned will apply to your child. Each patient's case is unique and only your consultant can diagnose the exact complications. I am guilty of this bad habit myself and have had sleepless nights worrying about the various life I threatening complications that my daughter could have.

If you are not satisfied with the way your current consultant is managing your child's condition, or if he or she is unable to provide further advice on the prognosis of your child's illness do not hesitate to ask him/her to refer you to another specialist who might have more experience in dealing with the same or similar cases to yours.

Nothing or nobody can really and truly alleviate the pain of seeing your son or daughter suffering, but knowing there are people out there who are in the same shoes as you would give you the support you deserve. After all they say that a problem shared is a problem halved and from my experience I think its true!

Should you be interested in meeting other parents who's child is also suffering from Hirschsprungs Disease I recommend that you go to the following website:

http://hirschsprungs-disease.com


© Copyright 2019 NickyWhite. All rights reserved.

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