As Funky Heart! readers know, my outlook on life is very optimistic. So when I received the following comment on yesterday’s post (Replace the PulseOx test for CHD!) it gave me pause for thought:
I absolutely hate to introduce this idea, but genetic progress will lead to aborted CHD babies.
That’s precisely what happened after the Cystic Fibrosis gene was discovered at Sick Kids in Toronto.
Not to say that this isn’t progress, but it could severely and negatively impact on CHD clinical, surgical and research developments for those alive today, and on those that could survive in the future.
You tell me…
As a parent, if you were told at 20 weeks gestation, that your child would have to endure multiple surgeries before the age of 5 and be faced with ongoing morbidity issues and early mortality, what would you do?
Here in Canada where abortion is pretty much a clinical intervention, where there’s no morality involved in the decision, it might lead to the loss of our investment in all kinds of CHD clinical, surgical and basic research.
It’s a huge emotional journey for parents, and I don’t know whether, if they knew what they know now, after experiencing the life of their CHD child what they would do if they could undo it at 20 weeks, long before they deliver a “baby” with a complex heart malformation.
Anyway, food for thought for all us in this world of CHD.
I hadn’t considered the implications if a test existed that could accurately detect a heart defect in a fetus, but science could conceivably take us there. Couple that with an e-mail discussion with a friend about U.S. sterilization laws in the early 20th century, and it really gave me something to think about last night and this morning during my therapy session.
So I decided not to approve the comment, (Where it might tend to get lost at the bottom of the page) but rather to feature it as a post and ask the question: What do you think? How do you think such a test would affect the CHD world? How would it affect you personally and/or your Cardiac Kid?
Feel free to post your thoughts or comments in the comment section. Healthy debate is welcome, but personal attacks or rude behavior is not.