Finding the right babysitter or nanny for your child can be a daunting task at the best of times. But when your child has to grow up dealing with the issues of cystic fibrosis, the search for a good care giver becomes a whole new ordeal entirely. It can be intimidating and even downright scary to think about leaving your child in the care of someone else, especially with the serious medical issues he or she has to face on a daily basis.
Cystic fibrosis is the most common genetic disorder affecting children in North America. For the layperson, a Google search of “Cystic Fibrosis” can be a little overwhelming at first. The most common feature of cystic fibrosis (or CF) is the presence of a thick, sticky mucus throughout the body, especially troublesome throughout the lungs and digestive system. In the lungs, the mucus becomes a breeding ground for bacteria and frequent lung infections occur. Efforts to clear the airways (by coughing out the mucus) are critical on a daily basis, sometimes several times a day. In the digestive tract, CF makes absorption of calories and nutrients difficult, so in most cases meals and snacks that are high in fat, nutrients and calories are important. Digestive enzymes in pill form are often required to aid in absorption and are taken with every meal and snack. Weight gain is often difficult and while exercise is important for airway clearance and overall health, special considerations should be made to ensure that the child gets enough calories and nutrition in any given day.
Apart from basic medical knowledge, the first thing to look at when searching for a caregiver is the person’s personality. It is essential to choose a caregiver who will be kind and patient with your child – CF not only wreaks havoc on the physical body, but the emotions as well. Cleanliness is crucial due to the child’s compromised immune system. A certificate in basic first aid / CPR is important, of course, but it is also important for the caregiver to have a basic understanding of issues such as bacteria transmission, nutrition, and the importance of making sure medications are taken on time. If he or she is not already familiar with cystic fibrosis, the parent can provide some information about the disease in general and about the child’s particular issues.
It is very important to observe the interaction between the potential childcare provider and your child. No matter the child’s age, it is essential for the babysitter / nanny to see the child first as an individual and not as his or her disease. The child will have his or her own interests, hopes, dreams and aspirations and it is critical to make time for fun, laughter and personal growth throughout each day – despite the seemingly never-ending barrage of treatments and tests.
But while fun is important, the caregiver should never - never (!) - allow the child to skip treatments, no matter how “healthy” he or she seems to be at any given moment. Don’t be lulled into a false sense of security. A child with CF can seem as healthy as any “normal” kid one minute, yet the next minute can spike a fever and end up bed-ridden for weeks with a new infection that seemed to come out of nowhere. There is a fine balance here and it is crucial that the caregiver understand this balance right from the first interview.
If the child is actively sick, a caregiver can make a big difference in his or her life by finding ways to make downtime fun! Rest and recuperation do not have to be boring words. The pair can have great fun keeping busy with movies and games on the couch, arts and crafts, finding new and interesting snack ideas on Pinterest, and just generally keeping their minds stimulated. Creativity is a great characteristic to look for in your potential caregiver. Don’t underestimate its importance!
In my experience, CF kids have a reputation for being remarkably tough and resilient individuals. It all depends on the level of the disease, of course – and no two cases of CF are alike – but in any case, it is essential for a babysitter or nanny to keep an open communication with the parents and to familiarize him or herself with the child’s particular issues. A communication board or notebook can be useful in sharing information that has happened throughout the day and to keep both sides up-to-date on treatments, symptoms (even ones that you may not initially see as “important”) and dietary intake. Look for a person who comes across as open and inquisitive and is not afraid to ask questions about the issues your child is facing.
Despite the multitude of daily treatments, extra caloric intake, hospital visits, and tests, it’s essential that the person in charge of the child’s care helps to make daily life as normal for them as possible. This doesn’t have to mean “normal” in the conventional sense. While it is true that there is nothing that can change the fact that the child has to deal with these difficult issues, THEIR normal doesn’t have to be seen as something “bad” - just different. As scary as it may seem at first to leave your child in the care of someone outside the family, it is important to remember that there are good people out there and that when you find the right fit for your family’s needs, your caregiver can truly become an important partner in your child’s development and growth.