Abortion for Doomed Fetuses

J.’s reading up on O&G for his examinations, and these little statistics stood out.

Complications of Pregnancy Termination (Mortality per year)
(overall mortality’s 0.0001% BUT morbidity is 20%)

Legal Abortion:
<9 weeks – 1:500,000
9-12 weeks – 1:67,000
13-16 weeks – 1:23,000
>16 weeks – 1:8,700

Illegal Abortion risk – 1:3,000

Pregnancy & Childbirth – 1:14,300

So this means that if a child has been diagnosed with a malformation incompatible with life (e.g. anencephaly) or even very short-lived (e.g. Trisomy 13 with most dying in 2 months), it would be actually to the mother’s advantage to abort prior to 16 weeks. Since the child is essentially dead (anencephaly = no brain) or soon to die (more controversial), there’s not much ethical issue there, is there?

Hmm…

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13 responses to this post.

  1. Posted by cheekysalsera on March 15, 2008 at 3:33 am

    I recall a chat with another friend, who quoted a judge as follows: “As lawyers, our first job is to do the right thing; the second is to protect our client.” Seems like there’s a kind of parallel for the medical profession. 1) Do what is ethical; 2) Improve your patient’s well-being / quality of life. (Just guessing la, since I know nothing about the working processes and decision-makings of the healthcare industry. But do correct me if I’m wrong.)

    Back to described situation for any mother, as per the post…

    Personally, I can’t see any mum in such a position taking it too well, whether she chooses to abort or not. Given this kind of situation where there doesn’t seem to be much ethical issues, how much responsibility are doctors expected to take for their patients’ well-being, both physical and otherwise?

    Reply

  2. I beleive it is the mother’s choice to abort or not to abort so long as she is given ALL of the facts, not just the negative information. Being a mother that was actually placed in that situation I know what my choice was. I carried my Trisomy 13 son for as long as I could. I was able to see his face, hold him, love him, take pictures with him, etc. All the things that any mother wants to do with her newborn. It is a decision that I will NEVER regret. Had I terminated the pregnancy, there would be alot of unanswered questions and “what if’s”. That’s a lot more to carry on one’s shoulders. To be left with wondering what would have happened. It may only be a small percentage, but some trisomy 13 babies do survive and no one could tell whether or not my child was going to be part of the 80% that die or the 20% that live. He had a 20% chance at life and I was not going to take that chance away from him. It is the responsibility of a mother to do all she can to protect and save the life of her child. I know I did all I could do for my son. He did survive 70 minutes, which was longer than any doctor expected him to live.
    Even if a mother aborts the fetus, she still is left with the grief of losing her child. That’s going to happen with or without abortion when faced with a lethal diagnosis so how do you think it’s actually in the mother’s best interest to abort and add to that pain? Please visit this website to learn more about children that LIVE with trisomy 13 http://www.livingwithtrisomy13.org
    There are also stories of children that are only in our memories. Please read some of those as well. If you would like to know about my story and how it felt when I was urged to terminate, you’ll find that on the Treasured Memories page under Corbin Glen Flax. To understand more of a mother’s perspective about aborting children that were “going to die anyway” you can also read some stories of regret. Thank you for your time.

    Robin
    proud mommy to trisomy 13 child
    Corbin Glen Flax

    Reply

  3. Posted by Kylie Sheffield on March 15, 2008 at 8:52 am

    Dear J,

    I refer to your comments on ‘abortions for doomed fetuses’. I thought you might like to consider a different perspective: that of a mother whose baby was ‘doomed’.

    When my second son Daniel (who was always a baby to me, never a ‘fetus’) was prenatally diagnosed with trisomy 13, we were told his condition was ‘not compatible with life’ and that he would most likely die in-utero, during labour or immediately after bith. My obstetricians were compassionate and obliging but could offer no information beyond this blanket prognosis. As we were not going to make a decision to terminate just because it was the usual course of action, we conducted our own research to try and find out as much as we could about trisomy 13, so we could make informed choices for our baby.

    What we found was:
    – Many babies with trisomy 13 (full, partial, translocation and mosaic) do make it to term and some survive beyond infancy and even to adulthood.
    – Of the parents who have decided to continue their pregnancies, none express regret, only peace and deep gratitude.
    – Many mothers have been encouraged, and even pressured, to terminate their pregnanies by doctors who base their advice on outdated and inaccurate information about survivability and quality of life.
    – Some mothers who have decided to terminate based on a difficult prenatal diagnosis deeply regret their decision.

    Based on this information we decided to keep and love Daniel for as long as we could. He was born on 7 July 2007 and stayed with us for an amazing 32 hours before passing away peacefully in my arms. During his short life he was able to drink, cry, squirm, sleep peacefully, and communicate all his needs to us, just like any other baby. I assure you it would not have been ‘to my advantage’ to abort at any stage of my pregnancy.

    In terms of ethics I believe there are a number of issues here.
    1. It is not the place or right of any doctor to assume that termination is ‘to the mother’s advantage’. It is a doctor’s responsibility to provide the necessary information to allow a parent to make an informed decision.
    2. While prenatal testing can confirm the presence of various problems it cannot accurately predict length or quality of life.
    3. How is ‘quality of life’ defined? Does the medical fraternity or any doctor within it have the right to assess that a child’s life will not be worthwhile based on prenatal information alone?

    Regarding your belief that a baby prenatally diagnosed with anencephaly is ‘essentially dead’, I can assure you that few pregnant mothers would agree. For most of us, the thing inside us is a living being as soon as we see the second blue line on our home pregnancy test. As long as its heart continues to beat, that baby is alive, regardless of predictions about viability outside the womb.

    You may see my response as the sentimental rant of a grieving mother, but I hope you will see it as an opportunity to learn more about the many conditions deemed to be ‘not compatible with life’. I urge you to visit http://www.livingwithtrisomy13.org to gain a broader perspective of trisomy 13 and see how many of these children are achieving so much more than was ever predicted.

    I would like to emphasise that I believe it is every mother’s right to make decisions for herself and her unborn child. But no one can make an informed decision without ALL of the available information. To decide to terminate with all the information at hand is one thing. To make this decision in the belief there is no other choice is something else entirely.

    I have read your ‘about J’ spiel and share your views on chocolate and beer. I hope you will consider mine on this very important issue.

    Regards,

    Kylie

    Reply

  4. Posted by Glenda on March 15, 2008 at 9:32 am

    The story of my 21-year-old daughter, Rebecca, is also on the http://www.livingwithtrisomy13.org website mentioned by Robin in a previous comment. Rebecca’s story is posted on the Children and Adults Living With Trisomy 13 album. Rebecca has a translocation trisomy consisting of part of the long (q) arm of chromosome13 and part of the long (q) arm of chromosome 15. Rebecca writes well in cursive and reads on about a 5th-grade level. She makes her own cereal in the mornings, often microwaves her own lunches (including reading and following the directions). There is another young man on the site with Full Trisomy 13 who is a PECS (Picture Exchange Communication System) whiz. He has little speech but communicates amazingly well with a machine that draws from an extensive set of picture cards, walks, and is toilet trained. There is another young lady with a partial trisomy 13 who reads, types, participates in horseback-riding and photography. We have two dancers on the album, one of whose parents were not allowed to visit the regular infant nursery during their pre-delivery hospital tour, because, they were told, their daughter would never leave the NICU. She also keeps up with her same-age peers in a regular classroom setting. We have others on the site who can sit up, crawl, cruise, walk, smile, talk or communicate with signs. All, regardless of whatever medical or developmental issues they face, are cherished by their families. Those parents who carried their children as close to term as possible or had their children for a period of hours, days, months, or years but are now dealing with their loss (see the Treasured memories album) are so grateful for the time they had – for love shared and lessons learned. A human being is more than the sum of his or her mental and physical parts.
    We on the site, and others of similar experience, have a special knowledge. We know that those who are the weakest can be used by God to develop in us strengths. Those who have the least verbal capacity to express love can draw from us the strongest feelings of love. Those who are supposedly delayed in their mental capacity can teach us things that no one else can.

    Reply

  5. Posted by Angela Whittle on March 15, 2008 at 10:06 am

    Hi, my name is Angela and I had a son 19 years ago who was stillborn with Trisomy 13. From my perspective I am eternally grateful that the relationship with my unborn son was not sabortaged by having an early diagnosis.( I found out at 32 weeks)So I disagree with your view on an early termination to be to the Mothers advantage. Whatever was wrong with him and however long he lived he was still my son, Thomas, who I loved and still do. He was not a clinical process that had gone wrong, he was a cherished child. Thanks for asking the question. Before I had Thomas, I was of the same view as yourself.

    Reply

  6. Posted by Cheri on March 15, 2008 at 10:27 am

    I too am a mother to a trisomy 13 ANGEL not fetus. David Michal Whittenton was born on 10-27-06 he was still born but I got to see him hold him and I find comfort in the fact that he went when he wanted to not when a doctor wanted him to. I had doctors ask me “Why are you fighting for the child?” Well I fought because I would with my other children. If one of my daughter’s got hit by a car you better believe I would give my last breath for them, I feel that I fought for David I gave him my body and he lived for 30 weeks inside me and in that time he changed many lives. As the wonderful strong mother’s who wrote before me please go to http://www.livingwithtrisomy13.org. incompatible with life my son had life and i miss him dearly. please educate mother’s and fathers that there are children that live and i am sure i am speaking for allot of mothers when I say even if there is 1% chance for there child’s life they will take that 1% chance to find out. My child was never essentially dead he lived,he moved and he had a heart beat he died when he took his last breath and went to sleep peacefully not because a needle went into his heart and made it stop beating. Please there is hope maybe a little bit of hope but that is more then any mother can ask for. Please look at both side’s but please don’t forget a mothers side most of all its her choice no one else’s.

    thank you for your time,
    Very proud mother to an Angel David Michael Whittenton t-13
    Cheri Whittenton

    Reply

  7. I am a RN with specialties in both L&D and NICU, and I am a Certified Grief Counselor. I have seen many of these ‘essentially dead’ children in my career, but I am also the mother of an actually dead daughter – one who was diagnosed with trisomy 13…My daughter did not die peacefully in my arms, she died as the result of a late second trimester D&E.

    My OB expressed a very similar opinion to yours…Why should I continue to carry a child who was going to die? Why would I want to continue to risk my health for a child who could not live? I needed to ‘get it over with” and ‘move on with my life’. Her opinion – and yours – was shared not only by our geneticist, but by our perinatologist and our pediatrician.

    I could argue the ethical side of this issue with you, but I understand that the medical community does not see these children as viable. There is no point in medicine, in caring for those who will just die…I could argue that some of these children do not die – as you have read…Some do survive beyond a few months and some go on to live long term…But instead I will argue that studies show that parents who terminate experience longer and more complex grieving – often disenfranchised complicated grief…This is not something you can just ‘get over’…

    The death of a child under any circumstances is a tragedy beyond imagination. But before you tell parents their child is ‘doomed’ perhaps you should give them all of the facts…Your own statistics show that it is far safer to carry to term than it is to have a late first or second trimester termination, and grieving the death of your child is hard enough without the potential for adding to your patients pain…If you are to do no harm, then you have to present all of the facts to parents…

    Not all of them will choose to carry to term, but those who do should be supported and be treated like any other expecting parent…These parents should have the right to decide how their children will be cared for – what they want for them – just like any other parent – and for those who choose to palliate – perinatal hospice programs can be invaluable to the family.

    Doing no harm means undersstanding that it is not YOUR child…That child is loved and wanted by that family and should never be treated with anything other than the highest respect…Any choice a parent makes along this journey leaves them to deal with their grief…Do not add to their pain…And remember, not every story has an unhappy ending…

    Laurie-Beth Brennan RN GC-C

    Perinatal Hospice Coordinator
    MISS Foundation HOPE Mentor/Volunteer
    http://www.livingwithtrisomy13.org

    Reply

  8. Little did I realise that when I posted a statistic of note from my OBGYN notes that it would provoke such response. Thank you so much for sharing your thoughts and the link.

    It’s something I hadn’t thought about much at all, since Trisomy 13 was one of the ‘2 common non-viable trisomies’ as compared to Down Syndrome (Trisomy 21) that we (medical students) focus on. It’s definitely given us extra to think about, especially with regards to medicine not just being about statistics.

    The statistics above only point towards mortality, and there is the very large 1 in 5 morbidity risk (the details of which are not elaborated upon in my notes) which likely refers to the physical and mental trauma referred to by you.

    From a medical viewpoint, we are obliged to give the facts, which as far as we know from studies are that Patau syndrome (and even more so anencephaly) children have a very, very poor prognosis and yet at the same time, refrain from imparting any bias that the mother feels pressured to make a decision she may regret later on.

    Yet at the same time, cases in which patients live past 10 years old are the exception rather than the rule and emphasis on the positive could promote false hope.

    I suppose it is this difficult balance we must strike in the future.

    Reply

  9. Posted by Cheri on March 15, 2008 at 8:59 pm

    Thank you so much for reading all of our stories. All we want is that our children’s voices be heard. We understand as parents that children’s born with Trisomy 13 have a very poor prognosis but. they are our children and we love them very much. Again thank you so much and i hope these little children both Angels and living have touched you heart and will help with your studies.

    Thanks again,’
    Cheri Whittenton

    Reply

  10. Posted by Glenda on March 15, 2008 at 11:08 pm

    “…emphasis on the positive could promote false hope.”

    Just as emphasis on the negative could promote false hopelessness.

    Reply

  11. Posted by Kylie Sheffield on March 16, 2008 at 9:55 am

    Thank you for your response, J. You might also be interested in viewing http://www.benotafraid.net/stories.asp, to read the stories of parents who have decided to proceed to term following a diagnosis of anencephaly. This same website has stories for many ‘universally fatal’ and ‘not compatible with life’ conditions.

    I have no doubt that it must be very difficult for doctors to find the perfect balance of objectivity and compassion in circumstances like the ones we’ve discussed. From what I can tell (based on my own experience and the experiences of the many other parents I have spoken with), parents facing a difficult prenatal diagnosis want, and are entitled to the following:
    1. The facts about both termination and continuing the pregnancy. It is unfair and negligent to provide text book statistics on trisomy 13, while failing to explain the emotional and physical risks inherent in any termination, whether it be by D&E or early induction.
    2. Compassion. If you are ever standing in front of a mother or father delivering the news that their child may die, please, please remember that they are going through the worst thing imaginable.
    3. Support. Prenatal diagnosis is indeed a wonder, but there is much to suggest that the medical fraternity and society as a whole are inadequately prepared to deal with what it yields. It is not enough to tell a mother her baby is going to die then send her off to wait for that to happen. At the very least, those responsible for making these diagnoses should offer a list of resources and support organisations to minimise the inevitable feelings of isolation and confusion.

    Thanks again for taking the time to consider this issue. I hope you will share what you’ve found with your class mates – I assure you, you will all be better doctors for it. All the very best with your continuing studies.

    Cheers.

    Kylie

    Reply

  12. Posted by Angela Whittle on March 16, 2008 at 10:22 am

    Dear J,
    Just a thought. You can give parents statistics on the chances of their anencephaly or trisomy 13 children’s chances of survival but also explain the psychological ramifications of termination as well. I dont have any guilt concerning the death of my Trisomy 13 son as he died naturally at 38 weeks. I can look back at his pregnancy with joy, his death with sadness but feel content with it all. Give equal value to the physical and psychological issues facing these parents and above all, give them support. Life is a long journey to carry regret. Thanks.

    Reply

  13. I have read all the responses and I have to say I wouldn’t change this experience for anything in the world, however heartbreaking it has been. Doctors cannot and should not decide who lives and who dies. There is a higher power for that. Doctors take a vow “do no harm” so you think terminating a baby because she/he might die anyway is not doing harm? As long as that hear is beating that baby is alive, it’s not for doctors to decide how long. My daughter Diana was born with T13 on 7/21/07 and we did not know she had T13 until she was born. Our daughter lived for 17 wonderful days. Doctors said she wouldn’t live past 7. We were able to enjoy her and know her before she went to heaven and we are forever grateful for that. We wouldn’t change those days for anything in the world, no doctor could have convinced me to terminate a pregnancy and keep me and my husband from knowing our beautiful daughter.

    Doctors should give the facts, parents should make the decision they think it’s best, in the end, they are the ones who have to live with it., not the doctors.

    Like I tell everyone who tries to tell me to get over it, unless you have been through this path you have no idea what it’s like. So probably one day when you do have children, you’ll have a better feeling of what we are all talking about here and how valuable those babies as well as all babies are.

    Reply

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