Caring for a medically complex child

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By Lisa Levin

One sunny cold day in February 1997, I was sitting in the obstetrician’s waiting room cradling my beautiful baby girl, and waiting for my post -partum check-up.  Six weeks earlier, I had experienced a grueling 36 hour labour proceeded by an emergency caesarean section.   It was tough but I was a warrior.  Baby Samantha and I made it through safe and sound. I was thinking about this when I smiled at the other new mom sitting across from me.   She also had a baby, but hers was in the stroller.  All I could see were adorable little hands waving.  Curious – was it a boy or a girl – I took a closer look and saw that the baby had Down’s syndrome. At that moment I saw stars, my palms began to sweat, my heart was pounding.  Naively, at no time in my pregnancy and during my high risk birth had I worried that my baby might be born with serious physical issues.  Preoccupied with painting the baby’s room, worrying about possible stretch marks, and pouring over my “how to” breast feeding instructional booklet, I had not allowed myself to consider that possibility.  However, that is the reality for parents of children who are born with and/or develop medically complex conditions.

Raising a child is a labour of love – filled with joy, tears, hugs, many germs, and some slamming doors as they grow to become teenagers.  Caring for a medically complex and/or fragile child is all that and much more.   Children with “medical complexity” is the broad term used for  young people who have a wide range of issues including congenital, genetic, chromosomal, and metabolic conditions (including Down Syndrome) as well as those with physical disabilities, such as cerebral palsy.

These little people often have substantial health care needs and require specialized care.   Medically complex children represent less than 1% of all children in Canada, however their numbers are growing due to major advances in medical and surgical care.   Their care often includes multiple and frequent subspecialist visits and hospitalizations, medical equipment (e.g., a tracheostomy; feeding tube; and/or ventilator), and/or specialized therapy.  Many families of medically complex children must learn how to use medical machinery that their child’s lives may depend upon. There is no room for mistakes.

I spoke with one mother of a medically complex child.  Her story was heart wrenching.  When Julie’s daughter Kate was born, she seemed healthy.  However, Julie began to suspect there were issues at 4 months when Kate was not meeting her developmental milestones, and she seemed to have difficulty hearing.  At 9 months. Kate became very ill.  Her blood pressure and heart rate both elevated quickly, she was dehydrated, metabolically unstable and had laboured breathing.  Baby Kate was hospitalized – the beginning of many such episodes over the course of her short life. Kate was medically fragile and Julie never knew when an episode would come on, or how long it would take to recover once Kate was discharged home. The acuity of her illness was episodic – nothing was predictable.  This made accessing services very difficult, if not impossible. Julie, like many parents of children with complex illness, quit her job to stay home and care for Kate. It took four years to finally diagnose Kate with a rare mitochondrial and life limiting disease called SIFD. By this point, Kate had 15 specialists responsible for different aspects of her care.  There was no preschool or tiny tot program for Kate. She did not “fit” into regular or specialized programs. Julie eventually found support through the respite program at Roger Neilson House in Ottawa – which offered pediatric palliative care respite. It was also here where Julie finally found emotional support for herself for the first time since Kate became ill. Tragically, Julie feels that the best care Kate received was near the end of her life – when the CCAC came in with its full team to care for her.  Before that the family only received limited respite funding to pay for care in the home. Kate passed away at only 8 years old.  While there was great love and affection, and times of joy, Julie describes her experience as a caregiver for Kate as one involving desperation and isolation.

Kate’s story is very dramatic and does not necessarily represent all children with medical complexity – however there are many common elements.

The role of a family caregiver of a medically complex child includes parenting layered on top of care management, monitoring the child’s condition, advocating on behalf of the child in a variety of settings  (schools, healthcare) performing therapies and treatments, administering medicine and medical care.   One report indicates that these family caregivers spend on average of 29.7 hours per week providing care, while 24 per cent provide care at least 41 hours per week.

It is no wonder that family caregivers of medically complex children experience substantial stress.  They often have greater financial burdens, and obtaining adequate home care can be very challenging.  In one large North American survey, approximately half of parents of children with medical complexity reported that a family member, such as Julie, stopped working because of their child’s health.  As medical diagnoses and care needs rise, families report higher rates of unemployment and unmet needs.

These challenges affect the health outcomes of the caregivers themselves.  Family caregivers of medically complex children report their health as fair or poor twice as much as the general population and one-in-four believe that caregiving has made their health worse. Adding to this can be a lack of social support and loss of relationships, marriage strain, stress, and feelings of loss and grief for what they dreamed their life and future—and the life and future of their child.

If you have a medically complex child and need support, here are some places to go for help and information:

A comprehensive list of services in Toronto can be found at  http://healthykidstoronto.ca/resource.html

Ontario resource information can be found at  http://www.211ontario.ca/basic-page/resources

Complex Child Web site – http://complexchild.org/articles/2016-articles/august/those-parents/

Offers caregiving and medical tips for parents and guardians supporting children with complex medical issues.

Excellent book about parenting a child with complex medical challenges.  What I Would Tell You.   http://www.whatiwouldtellyou.com/

Julie’s blog can be found at http://searchingforsolidfooting.com/

 

Lisa Levin is Chair of the Ontario Caregiver Coaition and is also the Principal Consultant for Lisa Levin and Associates where she provides services including strategic planning, marketing and communications and accreditation project management.  She also provides Care Management services to help families navigate the home and community care system. She can be reached at info@lisalevinandassoc.com

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