Meet the Cardiac Kids

Joshua's Story

Written by his Mother

Joshua was diagnosed with Complex Pulmonary Atresia (a completely blocked pulmonary valve during a fetal ECHO when I was 22 weeks pregnant, our care was transferred from our midwife to Mt. Sinai special pregnancy unit and from there we began weekly ultra sounds and a host of other tests. The prognosis was not good, and we were told to talk about whether or not we wanted to have an autopsy done, to make sure we had a camera on hand so that we could have a picture of him because it would probably be our only picture. The excitement of having our first baby quickly turned to fear and worry.

Due to a number of complications with the pregnancy Josh was born 6 weeks early, arriving via emergency c-section on the 31 st of January 2008. He was taken immediately to Sick Kids via the tunnel and placed in the Cardiac Critical Care unit. For two weeks Josh was unable to breathe without help, his saturation levels were too low to live without oxygen and his blood levels not good enough to have the balloon catheterization that he needed to survive. The first time I held him was when he was two weeks old, and still hooked up to so many machines that it was hard to find a place to touch him. His balloon dilation went well and by his third week of life he was moved up to the Cardiac ward 4D. From there we came to know our Cardiologist who has followed us for the last six years. On February 17 th 2008 Joshua was released from Sick Kids weighing 4lbs 4oz.

When Josh was three months old were told he needed another balloon dilation, it was on a Thursday and on Friday he was released back into our care. That Saturday during lunch we began to notice some strange rhythmic movements in Josh's arm, then his lips and eye on the right side. We called the Cardiac floor and were told to take him to the ER immediately. At eight o'clock that night Josh had an MRI that determined a massive stroke in the back of his brain, and a number of minor strokes in the deeper areas of his brain. The cause was a blood clot that was shunted through the hole in his heart up to his brain, where normally it would have been pushed into his lungs. He was admitted to hospital where he had a number of tests but the end result was a large question mark. The stroke has left ripples in Joshua's life that may never be fully overcome He has a language impairment, and needs regular language therapy, occupation therapy and physio therapy, he's making gains but it's a long process.

Josh had his first open heart surgery when he was six months old, his second a month before he turned three years old, his third when he was three and his fourth was this past summer when he was five years old. We have had 6 incredible years with our son, and our family has known more blessings through his life than we ever imagined or dreamed could be possible.

My special thanks and love to both the Cardiac and stroke teams and to Sick Kids, words will never be enough to thank you for the gift you have and continue to give us; our son.

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Recommended Reading

Congenital Heart Defects: Decision Making for Cardiac Surgery Volume 1 Common Defects

Congenital Heart Defects: Decision Making for Cardiac Surgery Volume 2 Less Common Defects

The Parent's Guide to Children's Congenital Heart Defects: What They Are, How to Treat Them, How to Cope with Them
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Congenital Heart Defects

Congenital Heart Defects are the most common birth defect. Each year, about 1 out of every 100 babies born has a heart defect.

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Congenital Heart Defects
Congenital Heart Defects are the most common birth defect. Each year, about 1 out of every 100 babies born...
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