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Heart Journeys

Joshua


It had been our dream to take our family to a far-off place and learn another language. We began living our dream. We moved to Akita, Japan and it was incredible.

Unfortunately, the tsunami and earthquake devastated the neighboring provinces and we were also worried about radiation. We decided to stay in Japan, and we helped collect funds and donated fruit which we sent to the devastated areas. Shortly after, we found out we were expecting our 2ndchild and began to prepare to give birth in our local hospital.

Even though my wife had an ultrasound at every prenatal appointment, it wasn’t until she was 33 weeks along that her doctor detected something wrong with our son’s heart and sent her for a detailed fetal echo. Grave faces and hushed voices followed. Our son was diagnosed with Hypoplastic Left Heart Syndrome (HLHS) and we were in shock and disbelief. The ground seemed to be shaking again. I tried not to listen to my wife as she explained what she found out about this condition thanks the internet. I turned up the volume on the TV louder so I wouldn’t have to think about it (denial).

To stay in Japan, we would need to relocate to Tokyo or Osaka for the surgeries needed. And with no family around, the language barrier, and the financial burden that it would be, we quickly realized that going back to Canada was our best option (thankfully our Alberta Health Care coverage was still active). What followed was a hectic time in our lives – packing up everything and moving back to Canada in a rush. She was 35 weeks pregnant and you can’t fly after 36.

After arriving home, we quickly began a series of appointments in Calgary, eventually finding our way to the Stollery in Edmonton. What followed is something most of us know about all too well. Twice, we kissed Josh good-bye as he was wheeled off for open-heart surgery – we hoped it was not sayonara. Josh was in hospital for 6 weeks after the Norwood and dealt with feeding issues and left vocal cord paralysis. Once home, Josh thrived and began gaining weight and exclusively oral feeding. When I wasn’t depressed about having no job and money, I was so happy! His Glenn procedure was done when he was 3 months old and he was in the hospital for 2 weeks. The support and care for us by family and hospital staff was overwhelming. The accommodation was extra-special. We loved our stay at Ronald McDonald House, of course we don’t want to be sick again, but we sure miss that place. As native Canadians and newcomers we all became instant friends as we exchanged supportive knowing glances in kitchens and elevators.

I don’t know what the ending to this story will be. But, right now, we are so happy that Josh is doing very well. His energy and smile are blessings to us. Our daughter was also affected the last year and a half. She shows her own child-like response by praying each day for two things. First, for two babies who are still in the hospital and second, for “all the babies in the hospital.” We echo that.

~ James and Yvonne Edel, parents to Naomi and Joshua (born January 17, 2012)


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