Parenting a Chronically-Ill Child

By Kellie Doligale

Parents typically understand that we can’t always shield our children from common colds, bumps and bruises, and flu season. But how many of us consider the likelihood of managing an illness with no end in sight?

A chronic condition is loosely defined as an illness lasting longer than three months that affects everyday life. A child with a chronic illness may or may not be well at any given time, but the condition is always present. Examples include asthma, diabetes, cerebral palsy, epilepsy, cystic fibrosis, spina bifida and congenital heart problems, among many others.

Conditions such as these require diligence, but no matter how careful a parent is, trips to the hospital are often necessary. The Centers for Disease Control and Prevention state that in 2009, among children with diabetes aged 0-17, 42% of all emergency room visits listed diabetes as the first cause for the visit. The CDC National Asthma Control Program estimated that 7 million American children have asthma, and approximately 1 in 5 children with asthma went to an emergency department in 2009.

Preparing both practically and emotionally for these emergency trips may ease a bit of the anxiety down the road for the parent of a chronically-ill child:

• Educate yourself. Understanding your child’s illness will never hurt. You will be better equipped to comprehend advice from physicians, manage the condition, and look for signs of distress. Babies and small children are unable to convey when their chest is tight or their blood sugar is low.
• Ask questions. When it comes to your child’s care, looking “ignorant” is the least important issue. If you’re unsure about a course of treatment, a medication, or even an appointment time, just ask. Health care requires a lot of communication across all planes, and you do not have to rest until you feel confident in the information you have.
• Record information. If your child begins showing symptoms on Tuesday, and you’re at the hospital on Friday, the staff will ask when and how symptoms began. Details are important. Even just keeping track on a scrap piece of paper could come in handy. You are your child’s proxy, and the more accurate information you can give a doctor in an emergency, the better.
• Don’t settle. If you are unsatisfied with your pediatrician or other healthcare professional, speak up or keep searching. A doctor you trust will help you feel more comfortable in a challenging situation. Once you find that right fit in a doctor, your child will be more relaxed around a familiar face as well.
• If there’s ever a time to be pushy, it’s when you’re in the hospital with a sick child. You are within your rights to ask for second opinions, thorough explanations and respectful treatment. If you feel unsure about the care your child is receiving but hesitate to offend a clinician, you can politely ask, “I’m sorry, but I don’t quite understand the reasoning behind this procedure. Can you please explain it to me so I don’t worry?”
• Be prepared. If your child is a frequent flyer at the hospital, try to have a rapid-fire packing strategy ready to go. Consider keeping a pre-packed travel bag. You may want to tear the prescription labels off your child’s medications and keep them in an envelope. If a trip to the ER is necessary, just grab the envelope to hand to the nurse when they ask what your child takes.
• Stay focused. You will feel tired. You will feel helpless. But a medical challenge is the time to gather your strength. Lean on loved ones for support so that you can be a superhero for your child when they need you.

Health management is arguably one of the most challenging and unrelenting facets of parenthood. The worry you feel for your baby in a crisis is almost unbearable. But as we all know, the world is an unpredictable place and humans are fragile. Preparing for the battles ahead is a step in the right direction.

Kellie is mother to 4-year-old Evelyn, who suffers from chronic asthma. You can read more about her personal story here.