Open for discussion

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.


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19 Responses to “Open for discussion”

  1. Paula Says:

    I can’t say for sure if it would increase the rate of termination or not. I found out prior to Hope being born that she would endure multiple surgeries and her mortality was not sure (is it ever…for anyone). We were offered (on way too many occasions) the option to terminate. Obviously we didn’t and wouldn’t consider it even if we found out (by some miracle freak of nature) that we were expecting again. I know parents that have decided to terminate when they found out prior to birth and I am guessing they would make the same decision whether it was from prenatal genetic testing or some other way of finding out.

    So…with that…I think there are some parents that would terminate just as they would terminate if they found out there were any kind of medical issue with their unborn baby that they didn’t feel they could handle.

  2. Stefenie Says:

    That is something to think about. The thought never really crossed my mind when I read your post that the number of abortions could jump. I’m not necessarily agreeing that it will jump because I know many heart families who were given the option to terminate their pregnancy and they all said NO WAY. They wanted to give their child a chance to fight, to live and be loved no matter how long they had with them.

    At the same time though I think it all depends on how the parents are presented with the information on their child. Some are not told that there is hope for children with heart defects. As sad as that is to think that there are some in the medical community who lack a bedside manner it does happen. That could greatly have more influence over a parent’s decision to abort than actually having a diagnosis during pregnancy.

    We found out about Logan’s defects two weeks after his birth so I have no idea what it is like to be “expecting” a CHD child. However, knowing what I know now I most certainly would not terminate but I can understand why some would be driven to do it. Tough choice.

  3. Jill Says:

    I did find out at 23 weeks gestation that Zachary had HLHS. I was given the option to abort… almost feel like they would have preferred it if I had. However, abortion was not an option for us. It really irked me that they gave the option so matter of factly. However, knowing as I did before hand let us prepare fully for his birth. We were able to research his condition and find the best hospital in our area to deliver him at. We were also able to meet tons of supportive heart parents and heart kids through online support groups. I think knowing before hand is very beneficial to the parents, however, the doctors should present abortion as the last option, not the first as it were in our case. We were continually told theat we wouldn’t know his quality of life adn life expectency (no one knows that) etc. Once we met with the surgeon and staff, we were presented with a migh brighter future and a much more positive outlook. So the doctors really need to be better informed about the success rates of the surgeries in order to give the parents more hope. Oh, and BTW, Zachary turned 9 in September.

  4. Kelly Says:

    I hope it wouldn’t but I think people that are inclined to terminate will. It saddens me because although there is immense suffering with CHD’s there is also incredible joy and fullness of life…no matter the length of days. If we could detect depression, future cancer, etc would termination be an option? I fear that in our quest to eliminate pain and suffering we might also eliminate our greatest joys.

  5. Leah Says:

    I’ve got a 2 year old heart warrior who has a single ventricle/complex CHD. I cannot even fathom the thought of him not being with us. My husband and I accept his special heart as a gift. Without his special heart, we wouldn’t have been blessed with such wonderful people in our lives (like our support group Mended Little Hearts), we wouldn’t have met so many caring, skilled healthcare professionals, and we wouldn’t have our beautiful, intelligent, son who loves life more than anyone I know. I feel that because of his special heart, we have become better people. We now reach out to other families in need and we have become blood donors. So much good can come out of a perceived “bad” situation. Yes, the heart surgeries are tough and you wish you could take your child’s place. But, once he recovered from surgery he’s loving life. I would never terminate because in our house, every second with our son is a gift.

  6. Beth Says:

    We found out almost from the very start that “something” was wrong…they found three birth defects before 13 weeks gestation, the last one the most devastating, in that most likely he would die, and if by some slim chance he lived he would probably be born with multiple birth defects, most likely “Down’s Syndrome”. We were sent immediately to the “genetic counselor”, she gave us “our options”, we told her up front…before you begin, do not mention the word “Abortion”, we are Christians, don’t believe in it, won’t do it, no matter what! We opted to have the amnio at 20 weeks, so I would know what to expect. Meaning…I already knew that I could give birth and the baby could die during birth or shortly after. When they did the u/s for the amnio is when they found the CHD. They could get a “good” picture of the Aorta, but could not get a picture of the pulmonary…..(b/c it was not there)! The amnio results were……….46 perfect chromosones!! No down’s, everything looks great, except the heart. We made plans to deliver at MUSC, Noah had surgery at 4 days to place a BT Shunt; at 6 months for a “complete repair”, and last year at age 9 (to replace the conduit he had instead of a pulmonary artery). He is thriving!! Has always sailed through every surgery without setbacks of any kind! Would I do it all again…..ABSOLUTELY!!!! I have been given the rare opportunity to witness a miracle close up, right in front of my eyes….everyday!
    So I can’t say if this test will increase the abortion rates in children with CHD’s however, it was never an option for us….even being told go home and within 48 hours you will miscarry……
    By the way…..the first three birth defects, fluid in the thoracic cavity, nuchal transluciency at 13 weeks (which caused an additional defect)the Lord took care of all three of those within a few weeks of finding each one….had I not had pictures of the defects the doctors would not have believed they were ever there…Noah has made lots of Doctors scratch their heads and re-read medical charts trying to figure out what was going on…we just say…He is our Miracle Child and leave it at that!

  7. Jenny Says:

    There is two sides to this coin that I can see. Yes, there will most likely be more people choosing to terminate their pregnancies. But on the flip side, there will be more parents who choose life and are able to benefit from new medical technology that is experiementing with treatment of CHD’s while still in the womb. This could result in more children born without CHD’s thanks to their early detection and intervention. My husband and I feel very thankful that no one ever pushed us towards termination (it was too late anyway- and not our personal conviction to do so regardless) or gave us a negative outlook on how our daughters life would be. They told it to us straight- that it would be hard but she could live a pretty normal life. It makes me so sad when I hear mothers say they were pushed towards abortion and given no hope for their children. Along with these tests the medical community needs to be educated on CHD’s and how things are changing for the better everyday. As for changing my decision if I had it to do over again… NEVER. My daughter lives such a great and happy life. Yes, she has struggled and had to fight more than any child has but I could not imagine my life without her.

  8. Shannan Says:

    We were told about my son, Jamie’s, heart condition (PA/IVS with interdependent coronaries), when I was 24 weeks pregnant. I was offered the opportunity to terminate (at 24 weeks!) several times. I knew we were facing multiple surgeries and possibly the death of our baby. I still chose to keep him. Jamie is 19 months now and thriving.
    I am not sure if a test would increase abortions; however, it will help parents be prepared for what they are about to endure. Although knowing that my son was going to be very sick took the joy out of pregnancy, I am glad that I knew ahead of time. Jamie was able to get the intervention he needed to do well.

  9. Nathan Says:

    Thank-you so much Steve for posting my comment for others think about. I have a few additional comments that you may or may not approve or post.

    I don’t believe that there are many parents that would terminate the future life of their baby, in the womb, or otherwise.

    I think what is more pressing as the future of genetics and the discovery of the CHD gene unfolds, is the idea that if you have the “gene” then we may be pressured by insurance companies and the ob/gyn and cardiac community to terminate the pregnancy.

    In Europe all MOM’s get comprehensive prenatal ultrasound which includes an examination of the fetal heart. And the statistically observed results are that 45% of those who were advised of a complex abnormality in the fetus decided to abort. And Europe has fully funded clinical, surgical and technical neonatal CHD care system and a fully funded and rich publicaly funded pediatric CHD care system.

    So imagine if a blood test would advise on the presence of a congenital heart defect here in the US, long before pregnancy is even a factor. What would private insurance company’s propose???

    We are in a world of stem cell and gene therapy. It can save lives. It might save our children’s lives. But it can also prevent a life from becoming.

    As a Mom of baby who is now a young adult with CHD, try and imagine a world where comprehensive pediatric clinical and surgical care drops away when they turn 18. That is the current reality. Because it does.

    Try and imagine a world where all the pediatric forces that saved your baby, and managed their care so carefully until they were 18 decide to allocate resources to some other childhood disease and not ours.

    Even Dr. Mustard, a former POLIO surgeon, who operated on my lifelong friend in the 50s, abandoned his POLIO children when the “cure” was found. He became a famous pediatric heart surgeon. Think about our surgeons today. What will they do, if they don’t have CHD babies anymore.

    This is not a doom and gloom story. But it is a story that we all need to appreciate as our CHD children grow, and certainly one that we need to share with them.

    Best to all of you.

    • Steve Says:

      Interesting that you assume that someone with a “CHD Gene” would be pressured to terminate. That means that you think Heart Moms are carriers of this (yet to be discovered or confirmed) gene. And if, as you say, we are in a world of Stem Cell and Gene Therapy, then why couldn’t these technologies be used to cure the defective gene that causes a heart defect?

      Adult Congenital Cardiac Care has been lacking, but that is changing. The Adult Congenital Heart Association (ACHA) is working to improve care for adults with CHD here in the United States. ACHA has teamed with seven other national CHD Support groups to push for legislation and funding of the Congenital Heart Futures Act – successfully, I might add. GUCH is doing the same in Great Britain, and the Canadian Adult Congenital Heart Network is working toward the same goal in your country. We don’t have to imagine that Adult Congenital Cardiac Care is lacking, we live with that reality… and we have decided to do something about it.

      Don’t be a spectator, get involved. Join a local CHD Support group. Start your own CHD blog. Visit your legislators.

  10. kathryn at expectant hearts Says:

    Steve, I am appalled by the number of complex chds not diagnosed prenatally. We also knew something was wrong at 13 weeks. We didn’t KNOW it was a CHD until 22 weeks. We were given the option to abort 3x (13 weeks, 18 weeks, 22 weeks). NOT an option for us as Christians. Knowng the gene wouldnt’ change us.. I suppose it might change the perspective of others..

    I guess I’m optimistic too cause I prefer to just think it means more education and more success..

  11. Margareta Barrs Says:

    Hi I just wanted to comment on this part of the post:

    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?

    I found out about my sons HLHS at 28 weeks gestation and got offered termination, comfort care or the surgeries and got told that they don’t know what age he will grow to: I choose the surgeries as I was pregnant with this life of someone special inside me and I WOULD NOT be able to terminate (even if he had a really small chace of surviving the 1st surgery). I had to let him fight his battle with me by his side.

    Not everyone would choose termination and if I got pregnant and got the same diagnosis again I would choose the surgeries again.

  12. Nathan Says:

    Thank-you so much Steve for allowing all of us to air our thoughts and feelings.

    We are in a new world. The passion of CHD patients and parents might just define what the CHD world will look and feel like decades from now. You personally live it, breath it, and try to make it better for us all.

    Like you, I am currently involved with many individuals and organizations in Canada and abroad, including CCHA to explore the future. I am an community and social activist — so sometimes what I propose might not be comfortable. But I am truly committed to healing and curing and comforting those with CHD.

    I know parents of young warriors are deeply engaged. I also know that so many parents drop away once they have been told their child is “cured” — which is in itself a pretense. Not a lie, simply part of the process of pediatric care and the drive to “fix” heart malformations.

    I still remember the day when it all seemed to feel okay. That my daughter was “cured”. It was glorious. But I’ve learned a great deal in the past year.

    Young adults struggling to survive…again. Anyway, many of you are still trying to manage the chaos that comes with the early days of your child’s survival. For some of you there will be another time, well into the future, when your twenty-something will end up in an emergency room. I hope and pray that this never happens. But it might.

    Steve is right. Armchair philosophy is not the solution to healing our kids — and grown-ups with CHD. We all need to be involved and engaged, not just in the early days and years, but in the decades ahead.

  13. melissa Says:

    Like many of your commenters, we were told at 20 weeks that our daughter had complex CHDs. And we were given our options including the option to abort. My bigger concern is this: there are no guarantees that “healthy” babies won’t develop some life-threatening issue later in life. Who is to say that my currently healthy 11-year old won’t be diagnosed with cancer? And that her prognosis then might be very grim? Rather than presenting abortion as a solution to the CHD diagnosis, we must continue to advocate for education, research, and support. Parents must know that there are options – good options with good outcomes – so that abortion doesn’t seem like such an easy choice. I cannot imagine my life without my special CHD daughter any more than I can imagine it without my heart healthy children. And I can only pray that they all stay healthy, knowing the final outcome is beyond my control.

  14. Megan Says:

    My paediatric cardiologist told me that they were seeing fewer children with complex CHDs now because parents were terminating pregnancies. This is in Australia where there are fewer services that there would be in the US, UK etc (although it is not to say that the services we have aren’t good). I wondered whether these parents were put under pressure by a strained health service in general, and more limited CHD services specifically.

    I remember thinking, “If you only want a perfect child, then why bother at all, because you won’t get one.” Both of my brothers were born healthy, but now due to mental illnesses, are more dependent on my parents than I am. Having said this, I am very concerned about my sudden decline in my health from age 25, and the ACHD team being unable to do anything more about my most serious problems. While I had several years of pretty decent health, it is never enough and there is still so much I want to do with my life and it feels like I still have a purpose…

    By letting go of these children – we are encouraging medical professionals and researchers to give up also. Some of us CHDers are having enough trouble just living day to day because we are tired or have trouble breathing – we need all the help and support we can get in the fight to improve our lives.

  15. katedaphne Says:

    What would I do?

    Well, I can tell you what I did and what I would do again: Be grateful that my daughter’s CHD (complex, incompatible with life) was detected at 20 weeks and do everything possible thru my pregnancy and beyond to care for her and save her life.

    Termination was never presented as much of an option for us, even had I been willing to consider it, because I was carrying twins. Reduction at that point would have been dangerous for the other twin. However, if the heart baby’s condition worsened, it was possible she could have threatened the life of the other (healthy) twin. Then we would have had some decisions to make. Thankfully nothing like that occurred.

    I was told that for the BT-shunt surgery she would need in her first week of life, she needed to be about 5.5 pounds. That’s small for a singleton but big for a twin. So I had my fetal echoes regularly and drank a LOT of protein shakes! At 37 weeks we delivered our twins, at 5 lbs. 14 oz. and 5 lbs. 19 oz.! Our heart baby got her shunt at 3 days old, corrected bowel malrotation at 23 days old, and had her Glenn at 4.5 months. She’ll have her Fontan when she’s 3 years old or so. Meanwhile, she is a strong, thriving child — and I think she is going to start walking before her twin!!!

    This isn’t the road I thought I’d be on as a parent, but I have a lovely daughter and more love and joy in my life than I could ever have imagined.

  16. Erin Says:

    As someone who is almost 30 I do worry about the health care system in the USA and what would happen if they could “prove” that this was in my DNA … I do not have any DNA malformations but my heart is malformed … they have assured me they do not know why I have CHD and it doesn’t run in my family … funny enough I had 3 CHDer’s in my family but all their parents are adopted and don’t have the same bloodline, we don’t consider ourselves a CHD Family … we don’t choose to think of our defects that way … we are all human and that is what scares me the most … I’m actually worried that not only do I need to worry about the care of myself as I get older but I wonder Steve if there will ever be an “age limit” … will the government ever come in because they are trying to give us in America what other countries have (where everyone is covered by the government) and say “You have outlived the statistics and we can’t help you anymore!” … Will there ever be a procedure I need that they don’t feel is necessary … will they decide that I can’t have a child even if my doctor feels it’s medically okay … will they try to rule my health or will my doctor be allowed to get me to how ever old I’ll be able to get too? I worry that CHD Research will come to a grinding holt when they discover that most of us won’t be able to work our whole lives and will eventually need Social Security Disability/Medicare/SSI/Medicaid because most of us can’t work after a certain age … will they make me get a flu shot when I’ve always gotten sick from having one including being hospitalized (my cardio says no more trying) … will they rule my life or will my doctor … I truly hope they find a way so that we can survive … and termination wouldn’t be an answer … I worry that soon termination of every defect will be mandatory … because it will be cheaper and will actually help economic growth of our country (I took economics in college and this was discussed) … I just hope the government never decides that our country or any country would be better off without us or any person with a birth defect or defect/disability for that matter!

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