I am a human behind this mask - News Releases

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I am a human behind this mask

As an infant and then as a child, Nabihah was sick all the time. She would cough persistently and run short of breath, but no one knew why. She also wasn’t gaining the amount of weight needed for healthy growth and development. Numerous visits to health care specialists in the Greater Toronto Area, where Nabihah lived with her parents, failed to pinpoint a diagnosis.

Then, at the age of four, Nabihah’s health took a very critical turn. Panic-stricken, her parents took her to The Hospital for Sick Children (SickKids).

After another battery of tests failed to solve the mystery, one SickKids staff member suggested conducting one last exam: a sweat test, which would measure the amount of salt chemicals (sodium and chloride) in Nabihah’s sweat. Normally, sweat on the skin surface contains very little sodium and chloride. However, people with cystic fibrosis (CF) have two to five times the normal amount of sodium and chloride in their sweat.

Nabihah’s sweat tested positive for CF – a life-limiting disease.

A flurry of treatments, medications, and therapy followed, stabilizing the infection in her lungs and allowing her to breathe better.  

“My family came to know the staff and walls of SickKids very well,” says Nabihah, who turns 18 this year. She sits on a bench in her room on the 7th floor at SickKids, with her knees folded, one hand holding her cheek as she explains. Tubes and wires snake up along her legs and disappear under her t-shirt. This time, she’s been at the hospital for almost two weeks.

“There were so many hospital admissions that I missed a lot of school. Some of my teachers were great and they would drop by with a basket full of cards from my classmates,” she says with a small smile. But the toll of being in and out of the hospital significantly affected friendships, school work, and the routine activities of a happy and healthy childhood.

By the time she reached grade seven, Nabihah felt her world slipping. During a family vacation in Pakistan, Nabihah stopped keeping up with her grueling daily treatment plan. She became critically sick upon her return home, contracting a bacterial infection in her lungs. Her health care team at SickKids managed to treat the infection, but now in addition to treatment for CF, Nabihah had to take more medications on a daily basis.

“I think that’s when I really hit an all-time low — I broke down and cried the day I had to start that treatment,” Nabihah says. “One of my doctors sat down next to me and said, “You have depression.” I’d kept it inside for so long and let it fester away. I didn’t want to talk about it with anyone.”

Louise Taylor, the nurse practitioner at SickKids caring for Nabihah since she was first admitted to SickKids as a child, noticed the changes in Nabihah’s mental health. “I’ve seen her sadness for years. I’ll often be the one to see her, and we’ll talk about how she’s feeling, about life, her fears. But it got to a point where she couldn’t even talk — she would put a hood over her face or sit in the dark. Sometimes it’s hard to know how to help or what to offer. The resources are also so slim, that what we may have to offer isn’t always the best fit for every patient.”

All too often, the system has been set up to treat a patient’s physical health, or their mental health, but not both together. In many cases, patients like Nabihah are typically referred to a mental health provider for a separate consultation, which makes it challenging for them to get a full picture of the patient’s health or coordinate ongoing care with the medical team.

As a result of the Medical Psychiatry Alliance (MPA), a unique health care partnership focused on integrating health care for patients living with co-existing mental and physical illness, Nabihah’s team at SickKids now includes Dr. Pam Mosher, a staff psychiatrist at the Hospital who specializes in palliative care. Dr. Mosher is a core member of the care team and is actively involved in discussions related to all of Nabihah’s healthcare needs.

“We don't expect the psychological symptoms to all go away, given the gravity of Nabihah's illness, but having this kind of integrated mental and physical health care support is so vital,” says Dr. Mosher, who is also an Assistant Professor in the Department of Psychiatry at the University of Toronto. “Through this MPA initiative, we’re able to more effectively support patients like Nabihah who have struggled to cope with the psychological tumult that comes from facing a disease that will limit her life-span.”

This new initiative is similar to other MPA programs at various partner organizations focused on increasing mental health supports for patients living with a chronic illness. For example, Trillium Health Partners in Mississauga is helping health providers in its Paedatric Diabetes Clinic identify and support mental health and quality of life issues in their patients diagnosed with diabetes.

“Kids living with a chronic illness need not only good medical care, but also this kind of active and accessible mental support,” says Taylor. “During these past six months, Nabihah has been able to talk to us and express her feelings more clearly and it helps us better direct her medical care. I have a feeling it’s due to Pam’s time with her.”

Nabihah’s eyes brighten when she is asked about Dr. Mosher's role on her care team. “I feel generally happy now. I wish I had talked to someone sooner. I wish other teens struggling with similar health issues find someone to talk to. Whether it’s a sibling, a classmate, a doctor, a nurse or a family member….you’re going to need a constant when things are upside down. Keeping it inside is toxic.”

As Nabihah nears her 18th birthday, Dr. Mosher is also an important part of her health care team which is helping her to prepare for the transition to adult care beyond the walls of SickKids.

Remarking on Nabihah’s inspiring journey, Dr. Mosher says, “While her lungs may be failing, her spirit never will.”

 

Related links:

Treating the emotional effects of adolescent diabetes

New interventions to improve kids’ health

How do we provide timely access to integrated care?