Monday, January 5, 2009

Gabe's Story

Debbie Johnston is a mother to a little boy named Gabe. She is on the Einstein-Syndrome list, so I have followed their journey for a few years.

I will quote what Debbie said, as she explains Gabe's situation well.

Gabe's diagnosis, originally HLHS with DS was considered rare and the original prognosis was very grim. Even the very top pediatric cardiothoracic surgeons had very limited experience with this dual diagnosis. They all wanted to treat him the same as they would a child who did not have DS, which meant he was to have a single ventricle repair. Most kids with DS do not survive beyond age 7 with this repair. We prayed, we researched, and finally we found a surgeon who was able to give Gabe a bi-ventricle repair. As a result, several other children like Gabe were spared the single ventricle repair. They went to the same surgeon we went to, Dr. del Nido of Boston who specializes in bi-ventricle repairs and kids with DS. Only recently he has gained enough data points to start spreading the news of this success, and to warn other surgeons that a single ventricle repair in a child with DS is a very poor option.

If you know of any child with DS who has an unbalanced heart (meaning one half is underdeveloped) I would greatly appreciate it if you could have them contact me. It makes me cringe to know that most surgeons are continuing to perform single ventricle repairs on these kids when there is a better way.

Gabe has a CaringBridge website which can be viewed at

Debbie also made a video montage about Gabe's story, which can be viewed at

If anyone would like to contact Debbie, feel free to leave a comment here or send me an email and I will give you her contact info. Debbie's email address can also be found on Gabe's site.


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