It's said that necessity is the mother of invention.
Ashlynn Rogers is a case in point – in more ways than one.
In 2011, during the late stages of her first pregnancy, Ashlynn began having symptoms that signaled her heart was in trouble.
The resident of Newcastle, an hour east of Toronto, was born with a heart defect called pulmonary stenosis (narrowing) and underwent surgery when she was just five weeks old. The condition, caused by a faulty pulmonary valve, thwarts blood flow from the right ventricle to the lungs.
"They removed the valve and inserted a patch to open it up," Ashlynn says of that first open heart surgery, which took place at the Hospital for Sick Children in 1985.
"Graduating" as a patient from SickKids in 2003, at age 18, meant crossing the street to begin being monitored by adult congenital heart disease specialists at the Peter Munk Cardiac Centre (PMCC), which is home to the largest program of that kind in the world.
While a PMCC cardiologist was closely monitoring her during her 2011 pregnancy, Ashlynn's symptoms of palpitations, dizziness and fatigue, persisted. She gave birth to baby Raegan in June of that year without incident but four days later, Rogers was diagnosed with pulmonary insufficiency.
Another heart surgery was now a certainty. Exactly when, remained unknown.
"As my body re-adjusted after pregnancy, I got better but the symptoms had an impact on my daily life as a new mom," Ashlynn says. "And I had to meet a certain threshold of heart function, before I was eligible for surgery."
By the fall of 2013, things got worse.
"At that point, my symptoms were similar to someone with heart failure – swelling and even a loss of consciousness," Ashlynn recalls.
With cardiac surgery slated for February 2014, her focus turned to Raegan, now a toddler.
"Prior to my surgery, I knew there was going to be a period of time when my ability to be a mom would be impacted," Ashlynn says. "I wanted to be able to prepare my daughter in some way."
So, Rogers began hunting for resources to help explain her upcoming surgery to her child. She discussed her quest at length with Barbara Bailey, Nurse Practitioner, Adult Congenital Heart Disease, PMCC.
"Heart patients who are parents have a tremendous amount of anxiety about their children," Barbara says, "who will be there for their child during their surgery, can their child cope with a critical life experience, who will care for their child when they are in hospital, will the children have any psychosocial needs or challenges?
"Undergoing heart surgery makes patient parents more aware of their own mortality and the need for advance care planning surrounding care of their offspring."
Following some market research, Barbara and Ashlynn discovered that health-focused written resources for children existed but only about coping with death and cancer. There was nothing heart-focused.
"Prior to my surgery, I knew there was going to be a period of time when my ability to be a mom would be impacted. I wanted to be able to prepare my daughter in some way."
Labours of Love
In February 2014, days away from surgery, Ashlynn took matters into her own hands. She melded her background as a teacher, her need to prepare her daughter, and a desire to address the gap in educational resources for other cardiac patient-parents.
"That's where the idea came from," she says. "Working with children with autism, we use social stories to explain something that is going to be happening to them. It helps them understand."
The result was
Mommy's Surgery – a PowerPoint turned-storybook, with pictures – for Raegan.
"In the book, I explained I was going to be in hospital, where I was going to stay, what my chest would look like, how she could help," Ashlynn says. "Many patients who have the same congenital heart condition as I have discover that it's in our late 20s and 30s when we quite often need surgery.
"That's also the time, many of us become parents."
On Feb. 20, 2014, at age 30, Ashlynn underwent a five-hour long procedure to insert a new pulmonary valve into her heart. The operation was performed by Dr. Edward Hickey, Cardiac Surgeon, SickKids and the PMCC.
There were no complications, Ashlynn recovered better than expected and was home in four days.
Caring for her toddler though, was anything but typical.
"Because of the surgery, there was a long time where I could not lift my daughter," she says. "For six weeks, I couldn't carry her, lift her out of her car seat or anything.
"I think that's the hardest part when you're a parent who is unhealthy, the guilt you feel."
What helped ease some of the guilt for Ashlynn was the book she wrote for Raegan.
"I think it helped," Ashlynn says. "She would remember why I wasn't there."
Meanwhile back at the hospital, Ashlynn had planted an important seed. Her book,
Mommy's Surgery, triggered efforts to create a similar resource for cardiac patient-parents at PMCC.
A novel production
"Creating a book for children was a brand new experience which we all found to be challenging, but extremely fulfilling," says Elke Ruthig, Manager, Patient and Caregiver Education Program, Toronto General Hospital.
"We had to think about and plan for this resource very differently. Developing high-quality materials for patients and their caregivers is a complex, evidence-based process."
The multi-disciplinary approach to this UHN first yielded
Henry's mom needs heart surgery, a storybook intended for children, aged three to 12. Funded by the PMCC and employing UHN Patient and Caregiver Education quality standards, the book will be given to patients for free.
"Creating a book for children was a brand new experience which we all found to be challenging, but extremely fulfilling."
Development of the storybook involved multiple interprofessional experts, including Dr. Edward Hickey (Cardiovascular Surgery), Dr. Rima Styra (Psychiatry), Erin Culhane and Phyllis Mancini (Patient & Caregiver Education), and Angela Lee, Nurse Practitioner (Adult Congenital Heart Disease).
"Our process included retrieving direct feedback and content ideas from cardiovascular surgery patients as partners, then merging that with content recommendations from the clinical staff," Elke says. "We also had several children provide feedback on a first draft which improved the material even more."
Elke says it also became clear they needed the expertise of a child life specialist, so they reached out to Sabina Spataro at SickKids to collaborate on the content. Graphic artist Kristin Foster from UHN Patient & Caregiver Education was enlisted to bring the storybook and "Henry" to life for readers.
"We hope this book will help to ease the anxiety and worry by giving patients a tool that includes reliable information, resources, and support to be able to cope together with their children," says Barbara, who is herself a mother of two young children.
Though patients and caregivers access web and social media resources for health information, Elke says, they consistently says that one-on-one communication with their healthcare provider is most important to them.
"They trust what we have to tell them," she says. "So, structured education and teachable moments provide excellent opportunities to develop strong bi-directional partnerships with patients and caregivers that support self-management.
"Interestingly, books are still one of the desired formats for learning."
The book is accompanied by a tipsheet for parents and caregivers. The next step is dissemination to the PMCC's point-of-care staff to ensure the target audience receives the book and provides feedback, with the ultimate goal to publish it.
"I love it. I actually cried reading it," says Ashlynn, now a mom of two (Bryson was born December 2015), who saw the book for the first time during a recent clinic visit. "It is wonderful to know that I was able to contribute in some way.
"It's such a stressful time. And especially for cardiac surgery patients, where there is such a huge recovery. It's important for children, patients and parents."