Your choice

It’s going to be a very busy day for me – I’ve got a therapy session and several other errands to run. I’m leaving early, and could be out late. So today’s post is a question:

Given a choice, would you devise a cure for Congenital Heart Defects, or prevent them? Your choice would have no effect on the other group – developing a cure will not prevent new cases from occurring; preventing heart defects will not cure those who already have them.

Give your choice and your reasoning in the comment section.

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14 Responses to “Your choice”

  1. Kristine Says:

    I’d cure them. I can’t watch my friend’s babies and children die any more. Maybe that’s a bit selfish, but I couldn’t do it.

  2. Paula Says:

    Now that is a good question. I am going to say that I would prefer to find a way to prevent CHDs. I know that means that there may be no cure for my daughter, but it would save millions of parents from having to go through everything we have gone through. I would also hope that while they are finding a way to prevent them from ever happening, they are also finding ways to cure them as well…or at least continue developing technology to improve the life expectancy of children and adults that are living with CHDs.

  3. Christina Says:

    I’m with Paula- prevent for sure.

  4. Laura Says:

    I would want a cure. I would do anything for Nathan not to have to go through this anymore. Then at least when other babies are born with a defect we can cure them too!

  5. Megan Says:

    I would say prevent, because I was think anything that would “cure” would involve procedures and medications that would probably be a lot more for these kids to go through. There have been so many advances to help treat CHD that a preventative would save kids from having to endure anything from here on out.

    I would love to see a world with no zippers! 🙂

  6. Shannon Carter Says:

    Whew. I want to say that’s a tough question…I’d like to go both ways. Selfishly, I would choose to cure CHDs so that I could save Derrick. However, if I truly had the choice I would prevent them. I would never, ever wish for any parent to hear those words, “There’s something wrong with your baby’s heart.” They shouldn’t have to miss out on the very first moments of their child’s life because they’ve been whisked away to the ICU.

    And NO child should ever have to endure the pain of heart surgery. Ever. Ever. Ever. Prevention would save way more people and way more heartache. Even though it wouldn’t save mine.

  7. Wendy Says:

    Prevent. Even though prevention won’t save Chris from a lifetime of surgery, it will save other families from becoming “heart families”. It will save them from hearing those terrifying words “something is wrong with your babies heart”. It will mean that parents won’t ever have to hand their newborn/toddler/child/teenager/adult child over to surgeons, hoping and pleading they make it off the table and back to their arms. It will mean that parents won’t spend every moment ALWAYS watching for signs of CHF, even if it’s mostly subconscious. And it will mean that no parent will have to bury their sweet child because of CHD’s. And after we’ve figured out how to prevent CHD’s, we can focus on complete cures for those warriors who continue the fight.

    Wendy

  8. Becki M. Says:

    Is it selfish to want to cure heart defects first, so my son can live a long life along with all the other kids now living with heart defects. Then after a cure is developed, I would develop a way to prevent heart defects, so no other kids would be born with them, and making the cure not needed, or obsolete.

  9. somer Says:

    I don’t think it’s selfish to want your own child to live! I want my child to live. I would move heaven and earth if I could just to bring a few more happy days to my precious child. I would choose cure, then work on prevent. That way, every child born after cure but before prevent would be told “there’s something wrong with your child’s heart…but don’t worry, there’s a cure!” That would save all of them instead of turning your back on those who have already been born and are fighting.

  10. Margaret B Says:

    This is a great question. I would say cure, because then even when CHD is diagnosed, we can cure it (Since this is my OWN universe in which I am answering this question, I would make it an EASY cure, maybe just one dose of medication, which has no side effects, and can be given either in utero or as soon as CHD is discovered.)

    That way, people currently suffering from CHD can be cured, and “heart families” as we know them today would simply not exist – a quick dose of medication, and your child’s heart is cured.

    Hey, a pediatrician can dream, right??

  11. melissa Says:

    What a fabulous question! I struggled with my answer – wanting first to say prevent, then cure, then back to prevent – and after much soulsearching I have to go with cure. While prevent would ensure no family would ever face CHDs again, I have to look at the total of what CHD has brought to our family. I hate all that Ava has gone through but I would hate to throw out all of the good that has come with it! The CHD journey is definitely complex but a cure would ensure that we got to keep the best parts of our journey while guaranteeing a happy outcome.

    • Laura Says:

      Mellssa I totally agree with you! I know the journey has been hard on our family (and we have only been doing this for 3 years) but we would never be where we are now if it wasnt for Nathan and his heart condition. We are so happy that we moved to Massachusetts!! I dont think we would have ever even considered moving if it wasnt for him. Plus all the joy and all the families we have met a long the way has been amazing. Ahhhhh….but a cure would be awesome:-)

  12. Erin Says:

    I would cure them … not to save myself but because the fact that CHD has given me a life story! I do not need to “wonder” what my mission on Earth is … because the day I was born everyone could see it! I know that what these children go through is tramatizing, trust me … I experienced it almost 30 years ago but it’s almost amazing the strength and willpower that wanting to survive will give a person and I am proud to have everyone see it … the reason I wouldn’t want to prevent them is not a selfish one it’s actually because without children who are born with CHD or any other birth defect for that matter the world would be a pretty boring place and instead of focusing on the “material” things of this world … CHD and other birth defects teach what is most important … love … kindness … compassion … strength … and for my family about God … the truth is in a perfect world (at least for me) we could be cured after the whole shock and awe … that way the lessons we are born to teach still get taught but without so much sorrow and pain for our families … and ourselves …

  13. Amanda Says:

    When you first asked this I thought, “I don’t want to think about this.”

    When Liam was diagnosed, I never prayed for some miracle that would cure him before he was even born – not that I didn’t want that – but it seemed so impossible and unrealistic based on what the doctors told us that instead I prayed for the grace to handle what came. I knew I would need that grace and put to good use.

    I am usually an optimist, but I know human nature, and I imagine that the only way we will ever really “prevent” CHD is the same way we prevent it now, with selective termination – a choice offered to me twice and offered daily to women all over the world whose children are born with CHD.

    The abortion debate aside (and that is not what I want this to spark), if they prevent CHD’s at its most refined it will likely involve gene testing and embryonic selection to prevent termination, which will always be a last resort. So at its best, a prevention is going to be very expensive – but still probably not as expensive than it is to treat CHD now.

    I would rather see the energy and research continue to explore the lives that are here now being lived and being lost with less invasive cath technologies and more inventive treatments. Even with the inutero surgeries we’ve seen come out of Boston, the results have been promising but mixed – that’s a hybrid between prevention and cure.

    I guess the pragmatist in me took your question from WHAT to HOW – and maybe I know to much about how things work and could work and likely would work. At any rate, I know there are lots of people “preventing” CHD every day by terminating the patient before he/she is actually born. I’m not judging that, I’m a definite fence sitter because I have the humility to know I don’t know everything and judge not lest I be judged.

    But knowing what I know about my child’s life and his joy and his promise, I just don’t like how capricious medicine is about these situations when the same medical community in another specialization holds so much opportunity for the same kids.

    I’d rather change the attitude of the world where CHD families are not ostracized, where people think that death is better than what my son has endured, and where it’s easier just to start over than to fix what’s broken. I’d rather act than daydream about science that is probably a half century away. But when it finally comes I imagine it will be a meet-in-the middle preventative cure much like the inutero surgery of today but with better success rates.

    I would rather change the world because it’s something we CAN do, by helping fund research, by not being embarrassed or ashamed of CHD, and by shouting out – no, it is not OK to marginalize anyone with disabilities, even if you can’t see the ailment when my son is fully dressed. I would rather make the world a place where my child isn’t hiding from his illness but fights it openly and without shame, because I know that’s something I can both imagine and accomplish.

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