Friday, March 30, 2012

One child, 10 conditions, no diagnosis

One child, 10 conditions, no diagnosis
By Julie Drury

Our daughter Kate (above) had 10 medical conditions but no diagnosis. Episodes of repeated vomiting, pain and racing heart rate sent us back to the emergency room -- over and over and over again.

Imagine arriving for the 10th time, your toddler presenting with the same unexplained symptoms. Armed with a binder that contains your medical journal, a list of countless specialists and ever-changing medication schedules, you tell your story to the triage nurse, then a resident, then a doctor. After hours of waiting, you move to an inpatient ward, where you repeat your child's complicated history again – to a student, a nurse, a resident, an attending physician and many specialists.

No one knows your child and no one knows what's wrong. You're afraid, frustrated and exhausted.

This was life for our family.

At nine months, Kate became acutely ill with episodes of cyclical vomiting, pain, lethargy, high heart rate, low oxygen saturation and severe anemia. Our family doctor seemed overwhelmed with her symptoms and began treating her for reflux. His advice was to take her to emergency at the Children's Hospital of Eastern Ontario (CHEO) in hopes that they would identify the underlying problem. We rushed there more than 20 times in the first 2.5 years of Kate’s life and had many hospital admissions.

In addition to serious medical problems, Kate was losing her hearing during this time and was eventually diagnosed with global developmental delay. To address this, we added rehab professionals to our long list of specialists: occupational, speech and physical therapists, auditory-verbal therapists, psychologists, a developmental pediatrician, integration support workers, school board advisors and community care access staff. On a daily basis, we juggled therapy, clinic visits, tests and chronic illness. Every six weeks or so, Kate became seriously ill and we'd rush to emergency.

Kate’s severe episodes often happened in the evening and escalated throughout the night. In the early days, my husband and I would take Kate to the hospital. We needed two sets of arms to cuddle and comfort her. We needed two sets of ears to listen to the doctors and understand how they were going to treat her. Over time we settled into a routine of me taking the lead and my husband taking the night shift during hospitalizations. Every hospital trip involved asking friends and neighbours to care for our older son.

With no diagnosis and no doctor overseeing Kate's case, I became Kate's medical advocate and coordinator. I tried to ensure that all of her specialists were up to date on the approaches pursued by each. I kept a detailed journal and concise medical summary because her enormous medical chart wasn't always available during clinic visits. And it was too long to be read and absorbed during an emergency room visit or hospitalization.

After two life-threatening events, I worked with a discharge planning coordinator to pull together case-conference meetings about Kate. We wanted better coordination of care, and a solid plan to support Kate and our family when we showed up in emergency.

I was taken aback when our simple request for a triage letter outlining Kate's conditions and protocol for care was met with reluctance. None of her specialists wanted to take the lead. Each felt uncomfortable being the point person for a child with a complexity of medical issues.

We couldn’t keep this up.

Then, during a long admission in February 2010, we heard about a new pilot program at CHEO. The Coordination of Complex Care Program (CCCP) aims to improve care for children who are medically complex and fragile. The team supporting a child includes a 'most-responsible physician,' a nurse and family-care coordinator, and a nurse practitioner. These professionals ensure that information is shared and coordinated among specialists, the community pediatrician and community organizations (integrated support services, community care, therapists, schools, social worker).

A single point of contact for hospital admissions meant that someone finally 'knew' Kate. For us, that someone was Dr. Natalie Major. Dr. Major knew Kate's medical history, had a protocol in place to treat her, and could adjust it as necessary. We weren't constantly repeating our story and trying to educate different doctors.

The CCCP has changed our lives and, most importantly, changed Kate's life. Shortly after being admitted to the program, a major health crisis due to poor medical coordination was averted. It’s been two years since we joined the program, and we’ve seen many benefits.

We make less emergency trips. We have a medical protocol in place to ensure Kate’s efficient and effective care. We have a triage letter that explains her condition and outlines how she’s to be treated. There is better communication and collaboration between her specialists. Because procedures are coordinated, Kate has fewer pokes for bloodwork. If she needs a general anesthetic, Dr. Major leads a full case conference to ensure all aspects of her complicated condition are considered.

Our family -- once incredibly alone and burdened -- now copes with solid medical support.

The reality is that children like Kate, who are medically fragile and complex, are living longer. While they make up 12 to 18 per cent of the population, their care produces up to 80 per cent of the health-care bill. They have chronic conditions and are usually dependent on technology. They spend a lot of time in emergency rooms and hospitals. Their health can be improved – and pressures on the health-care system reduced – by putting programs like CCCP in place.

I’m happy to say that Kate’s health has stabilized over the last 12 to 18 months. She continues to have her acute episodes (26 to date). But because of Dr. Major’s early intervention, the episodes are handled efficiently and quickly. This minimizes our trips to emergency and the need to hospitalize Kate. Since joining the program, Kate’s underlying diagnosis has been confirmed. She has a rare form of Mitochondrial disease.

Families who can’t access programs like CCCP are suffering. They shouldn’t have to experience fear, frustration, burn out and financial ruin. Their children shouldn’t be at risk for medical error or omission because they are so complex. They shouldn’t have to consider moving to another part of the country to get the services they need.

Innovative programs like CCCP demonstrate that there is a way to keep these children out of hospital. But in Canada, these programs are few and far between. Our program – a two-year pilot – now has one year of project funding. We will continue to fight for funding and recognition of its importance. Medically-complex children – who weren’t part of our community only a few short years ago – deserve this essential care.

Learn more about Kate Drury and her family at Caring Bridge.


Thank you for this excellent summary of the challenges of being parents to a complex child and especially for you comments about a program that seems to be a win: win all around. It is true that complex children consume the lion's share of the pediatric health bill and in times such as these, engaging and collaborating with parents like you is the only way to improve service and decrease costs. I hope that providers, administrators and policy-makers start to listen and respond to experienced parents more.
Your daughter Kate is such a gorgeous little girl and I hope that her health continues to improve.

Thank you for writing this article. We have a son with complex medical needs and it has been through my own investigation that we have found things to help him. Across the board, medical "specialists" scratch their heads and no one wants to take responsibility for the care of our son. Frustrating doesn't even express the pain, agony and anger I have at the medical community for their inept care of our son.

I have often asked the Children's Hospital we used to frequent if they had a medical care coordinator. I have been told countless times what a great idea this is and good luck finding anything like this in our state. Sigh... I am so excited that something I have often dreamed of actually exists and is working!

This makes me even prouder of Cheo. I live in ottawa (although moving to toronto) and been a patient at Cheo myself
Cheo is paving the way I am glad to hear that you have found the support

I look forward to meeting Julie and helping to advocate for more permanent funding of this important programme. Wish our family had been able to have this kind of coordinated support!