Sunday, June 14, 2009

Family visit continued

We are still in Vancouver BC but heading home to Seattle today. Its a brilliant blue day with the flowers hiding their blossoms in the shade even though its only 7am. Wren went to sleep very early (at his own request) and slept from 6.30pm - 5.30am so he obviously needed the rest. We are staying in East Vancouver with my father's in-laws (he remarried a luverly lady who has family here as well as in South Africa where Dad lives) and enjoyed another early morning walk to JJ Bean and had a huge muffin and latte.

Now, the heart stuff. Recently, I have had two reminders about how common heart defects are and also how they can be invisible in families unless you really ask. Derek (in-law) has been telling me about his uncle Rob who was born with a number of heart defects (unspecified). Apparently the family was told he would not survive. At one illness he was cyanotic and they were told he "would not pull through this one". He did and lived until old age. His only surgery was at age 88 when he had surgery for something routine.

Another family connection came from my mother - I haven't written about it because it is very sad. One of my mother's cousins was expecting a grandchild but they found out at the 6 month ultrasound that the baby had HLHS with failing valves which would make a repair unlikely. They live on a farm in Africa and there was no chance at medical support in their region so they decided to have a termination. Being surrounded by famlies who have children receiving treatment for heart defects its easy to forget the many 'invisible' babies who do not make it both in the US and beyond. I am glad there are some charities like this one who try and provide medical treatment to children in areas which are not served by cardiology and surgeons.

4 comments:

Linda said...

Jack had a cousin who was born 45+ years ago with a "hole in her heart." She had 3 corrective surgeries, got worse after each one and eventually died at the age of 12. It makes me wonder if there isn't some sort of subtle genetic link to Gabby's defect.

Hope you have a safe trip back to Seattle.

Jane said...

Hi Shannon! Also check out

http://biglovelittlehearts.org/

I've just joined the board :)

Shannon said...

HI Linda
How are you doing girl? I am so terribly out of touch with everyone I feel I have been living in a cold room. Anyway, I hope to be at the next meeting with time to catch up.

Anyway, I totally share suspicions about genetics but I am not going to think about it yet because I am done with procreation. I hope that there is more information to help our heart kid's siblings assess their risk when they have kids themselves.

Shannon

Shannon said...

Jane
I am totally curious about this. Is it near you in Chicago? I wish I could find an organization to volunteer with - at any level. I am hoping to get into non-profit management and/or grant-writing so I would like to start by volunteering in that area.

Tell me more by email if you have time. How did you get involved?

Shannon