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Faith: A story from the heart

​The Schafer family grew from three to four last April when proud parents Lisa and Steve, along with their son Freddy, welcomed a happy and healthy baby girl. Weighing 7lbs 2oz, the family named their blue-eyed beauty Faith.
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“We chose the name Faith partially as a tribute to her paternal grandmother, whose name is Faye, and because of our Christian faith,” said Lisa. “Until recently, I never told my husband that I harboured a strong belief that at some point in her lifetime Faith would face a significant medical challenge—this challenge brings another level of meaning to her name.”

Faith was growing as a healthy baby should—she was gaining weight and showing a positive range of behaviours, appearances and temperaments. But on December 23, 2016 she developed a fever and in the days following, her eyes became red, her lips cracked and she developed an unusual rash on her torso. 

On Christmas day, the family left dinner early to take Faith to the nearest emergency room after growing concerns she might be dehydrated. “She vomited several times that day and had very little interest in eating or drinking. While in the emergency department we were told Faith most likely had stomach flu and were given medication to help with nausea,” said Steve. 

Almost a week later Faith had still not recovered. Lisa and Steve called the 8-1-1 Nurses Hotline and, after speaking with a nurse, decided to take her to the Pediatric Emergency Room at Surrey Memorial Hospital. After examining Faith, the pediatrician told the family they suspected that it was Kawasaki Disease (KD) because Faith was presenting several symptoms. KD is a rare, acute illness that causes inflammation in the walls of blood vessels throughout the body, including the coronary arteries that supply blood to the heart. 

After undergoing two echocardiograms a week apart, results showed coronary aneurysms (an abnormal dilatation of part of the coronary artery) which were a result of KD; Lisa and Steve were also told Faith's aneurysms had doubled in size in a week's time. To ensure no other vessels in Faith’s body were affected, she was transferred to BC Children’s Hospital where she had a heart catheterization to provide clearer images of the coronary arteries and to examine other vessels in her body. 

Having KD means Faith now lives with significant coronary aneurysms and is therefore at risk for clotting. To prevent clots from forming, Faith has to take a small dose of Aspirin once a day and is given a subcutaneous injection of a blood thinner twice a day. Lisa and Steve now know the signs of heart failure and keep a watchful eye for any abnormal bruising.  

KD is treatable and the inflammation that comes from the disease can also subside over time for children who experience coronary aneurysms. Although there is no guarantee, Lisa and Steve hope that the size of Faith’s arteries will return to a normal range.

The Schafers now travel from their home in Langley to BC Children’s Heart Centre for regular appointments and Faith continues to be closely monitored by cardiologists. With an understanding of KD, the family has grown passionate about sharing their story with hopes that other families will be able to recognize the symptoms and receive treatment early on.

Advanced technology
BC Children’s Heart Centre is the first in Canada to use a new advanced diagnostic tool to provide cardiologists with improved intravascular views and to better map changes in blood vessels. The new imaging system, Optical Coherence Tomography, provides high resolution images of the blood vessels and allows for virtual three-dimensional reconstruction of blood vessels. This allows cardiologists to understand how blood vessels are healing over time and decide on the most appropriate treatments for children with complex cardiovascular abnormalities such as coronary artery aneurysms.

BC Children’s Heart Centre provides leadership and excellence in the care of infants and children with congenital and acquired heart disease, from antenatal (fetal) diagnosis through to early adulthood. The Heart Centre cares for children across British Columbia and in the Yukon, with Heart Centre staff travelling to remote communities across the province to provide clinical care and expertise. As the first centre in Canada with this new state-of-the-art technology, the Heart Centre also cares for children from partner sites in the Western Canadian Children’s Heart Network.

Faith Schafer was diagnosed with Kawasaki Disease in early January (2017). 
BC Children's Hospital
Children's Health
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