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“Your baby has dilated cardiomyopathy and a 50 per cent chance of surviving until the age of four without a heart transplant.�

These were the unbelievable words the family of Scarlett Hooper, a chubby-cheeked, healthy-looking baby girl, had to come to terms with.

Cardiomyopathy is a disease of the heart muscle and the number one cause for paediatric heart transplants in North America.

A normal heart pumps out 60 per cent of its blood with each pump; Scarlett’s was pumping only 25 per cent. This is considered severe heart failure.

Kadri Hooper, Scarlett’s mom, describes her birthing experience at MGH and the delivery of a beautiful, seemingly healthy baby girl just four months earlier.

“Now I had to look at her and imagine the possibility of a future without her in it. It was too much to believe,� says Kadri.

The likelihood of Scarlett recovering seemed low.

“The doctors at SickKids couldn’t tell if the fever she had at five days old (caused by an enterovirus) played a role, but felt it was more likely genetic. We were given little reason to hope and encouraged not to think past the age of four,� says Kadri.

“I was in shock. We had gone from being a healthy family to having this heavy weight looming over us and had to learn how to live in a new reality.�

“I mourned the loss of my healthy baby while adjusting to a new, sick child that I loved deeply. I was determined to be the best parent I could be for the life she was given.�

Then - her three month check showed that her heart function had improved to 45 per cent. “The doctors were much more hopeful and began to entertain the idea that this might have been caused by a virus, rather than being genetic.�

Just three months later her function was normal and Kadri’s first thought was, “Wow, I might actually get to keep her.�

Today, Scarlett is a thriving 19-month old toddler.

It was very overwhelming, but being part of the MGH community made things a little brighter. “The support we received was incredible. Everyone went out of their way to help and I continue to get a ton of support from the hospital community. It has all been so meaningful to me,� says Kadri.

For more than a decade, MGH has partnered with The Hospital for Sick Children (SickKids) to deliver the highest level of quality, paediatric community care to East Toronto families closer to home. Last year, MGH officially joined Kids Health Alliance, a not-for-profit network of partners working to create a child and family-centred approach to high-quality, consistent, coordinated paediatric health care.

Dr. Kesete Bezu heard a faint murmur that no one else had heard and ordered an echocardiogram. Kadri firmly believes “he saved Scarlett’s life� and that her condition would otherwise have gone undiagnosed until she was in total heart failure.

“Everyone in the Child & Teen Clinic was so kind. Dr. Jelena Popovic and dietitian Sarah Patterson, in particular, were so thorough and went out of their way to answer all my many questions.�

“In the first couple of weeks Nurse Monica Ferneyhough met us every day at the same time while Scarlett’s heart medications were being increased to check her blood pressure, make sure she was okay and report back to SickKids.�

“Milanka Abazovic, a Special Care Nursery nurse who lived near us, was kind enough to walk with me to the hospital during those first devastating days and to drop in at home to ease my anxiety.�

The family continues to be thankful for the care Scarlett receives in this community.

As South East Toronto Family Health Team patients, Kadri likes that all the doctors there know Scarlett’s story. “I feel we get really great care and that there are a lot of eyes on Scarlett.�

PharmaSave offered a pharmacist to oversee the preparation of Scarlett’s medications. “Now, the whole pharmacy team knows the family and is concerned about Scarlett’s well-being. They have made giving daily medications to an infant a much less onerous task,â€� says Kadri.  

Kadri wants to encourage others to trust their judgement. Few health care providers the family met had ever seen a child with this condition, and heart failure babies often look normal and healthy on the outside.

“I was the only one who thought there might be something wrong with Scarlett. It terrifies me that this disease often goes undiagnosed or is misdiagnosed until it’s too late.�

This Heart Month Kadri would like to remind everyone to make their wishes about organ and tissue donation known. There are so many little heart warriors out there who aren’t as fortunate as Scarlett.