A Sensitive Topic

Warning: I am touching on a controversial topic.  I am trying very hard to share my feelings but also be respectful.

One of the things I like to do is to monitor the “stats” of my blog- how many views, number of visitors, search terms, where people link my blog.  It makes me feel heard.  I am amazed seeing how far my blog reaches (hello South Africa, Montenegro and Finland!).  And sometimes I stumble on other blogs I want to follow.

There is one site that links to my blog that I can’t see- it’s a closed group on baby center for those who have terminated a pregnancy for Down Syndrome.   I cannot see what they’ve written about my blog, but I do know it falls under the heading ”the mom who chose to carry her t21 pregnancy to term and the result.”  I am not here to pass judgment on women who choose to terminate and women who choose to continue- whether it be a baby with Down Syndrome or average chromosomes, whether she be a healthy baby or one that will be born sick, if even alive.  I am not here to make anyone feel bad about the decisions they make.  I recognize I cannot possibly understand other people’s circumstances, and so I support women in their own decisions about their bodies and their families.

But I hope no one reads this blog and thinks- well, that’s too hard, so I might as well save myself the heartache and just terminate.

This blog tells the story that not every pregnancy turns out the way you would think.  Accepting a Down Syndrome diagnosis did not give me a take home baby.  But choosing to terminate might have ended a pregnancy that would have ended in health.

People can terminate their pregnancy, whether it be complicated by Down Syndrome or not.  That is there personal choice; I have my own personal views.  There are things I would hope I would do in my own life when faced with certain circumstances.  I also recognize I can’t know what decisions I would make until I am faced with them.  However, my professional and political views are simple- support women throughout their life cycle, in whatever way they need.

If there were a woman in this online group who was my patient, I would care for her as gently as I would any other woman.  In fact, I have cared for women who have terminated pregnancies with Down Syndrome.  I want this group to know that their choice was hard, that I do not judge them.

Though I do want to share a few thoughts with these women.  To the women of that group who have read my blog:  Please do not use my baby’s story as justification.  I don’t want Mabel to be anyone’s reason she uses in choosing to terminate her pregnancy.  You had your reasons, and I am sure they were good ones.  Since you are in an online support group for terminating, I can tell you are struggling with your decision.  You were faced with two impossible choices: terminating a pregnancy and continuing one when you are unready. You made the best decision you could with the information you had at the time.  But please leave Mabel out of it.  I made the difficult choice to carry her and give her the chance, understanding my risk of losing her.  She deserved every second of the six hours she lived.  Despite my heartache, I would do it again, even knowing the outcome.

Advertisements

23 thoughts on “A Sensitive Topic

  1. The National Center for Prenatal and Postnatal Down Syndrome Resources strives to help medical professionals give the diagnosis in a balanced way, strives to help parents make fully informed decisions and strives to provide support for those continuing with their pregnancies. http://www.downsyndromediagnosis.org

    If someone is trying to make a decision, I would recommend http://www.downsyndromediagnosis.org “The National Center for Prenatal and Postnatal Down Syndrome Resources at the University of Kentucky’s Human Development Institute oversees three medically reviewed programs that complement each other in providing important resources and information for new and expectant parents learning about a diagnosis of Down syndrome: Brighter Tomorrows, Lettercase, and Down Syndrome Pregnancy. These programs also offer valuable resources for medical professionals delivering those diagnoses. You can also learn more about prenatal testing and available resources through this National Center webinar hosted by Down syndrome expert Dr. Brian Skotko and bioethicist Mark Leach.

    The National Center provides this clearinghouse of professionally recommended resources so that medical practitioners, expectant parents, and new parents have access to accurate, up-to-date, and balanced information about Down syndrome…..”

    The key words here are ACCURATE, UP-TO-DATE AND BALANCED. As many of us know, decisions are often based on fear, which is understandable. This site strives to make sure parents make INFORMED decisions 1) The Lettercase resource was developed with ACOG and other professional associations to make sure this resource is balanced. It is pro-information, not pro-life. 2) I authored a Life Glimpse in Brighter Tomorrows. The Life Glimpses are from families living with Down syndrome. I would say that section is pro-happiness (who would know better what life is like than those living it?). 3) The Down Syndrome Pregnancy section is terrific and ever-changing and updated often. For expectant parents.

    As an aside, our state just passed a law that all parents who receive a prenatal or postnatal diagnosis receive balanced information about Down Syndrome AND be referred to a local Down syndrome parent organization. I believe there are now 3 states in the country that have this law.

    Still thinking of you and your family, Meghan.

    • thank you for sharing! I found those resources very helpful in my pregnancy! I am pro-information too 🙂 I love that phrase (i might just borrow it from now on).

  2. You are a sweet lady! I hope against all hope people aren’t using your story like that. I think it’s more possible? People are using your story as a ‘look she got this amazing time with this amazing baby and look at all her gorgeous photos’ I think you are probably an inspiration to a lot of people ❤ I love you sweetie

  3. I also hope that the women in this group are using your story as a way of making sure they are considering many options and seeing many viewpoints before making their own decisions. Because, as you note, that’s all any of us can do – do our homework, make sure we’re as informed as we can possibly be, and then make the best decision we can out of love, knowing that we have explored every possible option and outcome as best we can. Although my decision (taking my son off life support) was different, I would imagine the thought process behind it was similar (research: my own situation medically, how others have handled both for and against, then decide: what’s best for me and my family based on this information). And I think you’ve said that beautifully and respectfully in this post, by the way! There’s not much that disgusts me more than babyloss mamas attacking other babyloss mamas for decisions that are SO personal and SO painful and SO fraught with circumstances that are unique that that baby and that family. Thanks for being one of the good guys :).

    • thanks! its’ hard- I want to support women, but I am haunted by this link- I think only because I dont know what they are saying about my story. how they are using it. And it is important to know that when choosing to continue a pregnancy with Down Syndrome there are risks for birth defects and loss. I did my research well 🙂 Hopefully they’ll see that the chances of having Mabel’s condition in relation to Down Syndrome (a fatal kidney defect) is less than 1%. I suppose it’s the risk/benefits of being on the internet- you put your words out there and anyone can do anything to them. a lesson I’m learning.

  4. This is definitely something that is really close to my heart, as a mumma who ended her pregnancy at 23 weeks after a severe diagnosis. Although my daughter did was not diagnosed with t21, she faced severe, ongoing, and eventually fatal complications. Im not entirely sure why I follow your blog to be honest, because I often feel judged by people who received a severe diagnosis and chose to carry to term anyway, because their reasoning, often feels like an attack against mine (“we wanted to give the baby a chance” I read “you didn’t even let your baby try” or “we believe god would do what was right” I read “how dare you not trust god”- which is offensive to me because I don’t believe in god) and also because my choice and the justifications for it, are often found offensive by the people who chose to go to term, like when I say “she didn’t deserve for her short life to be spent fighting, scared, separated from my arms and in pain” which is almost a direct contradiction to when you say “she deserved every second of the six hours she lived” I think it’s so easy to get caught up in reading what we want in what other people say, not what they mean. I could assume you feel that I denied my child a short life she deserved, and you could assume that I feel that giving your child 6 hours in NICU was wrong…. But I know that on my end that’s not at all where I am coming from, and I hope for others to have the grace to not judge me for making a different choice to them.
    I would like to say in my situation, I was not “unready” to raise a child with disabilities, our decision was always based on how the health of our daughter would affect (and end) her life, not how it would be for us to care for her. I also don’t think that being in a support group with people who have made the same choice has to mean that people are struggling with their decision, it could simply mean that they want to connect with people who understand their choice, how it affects their grief, and can offer support and insight from a place of true understanding, not from someone who either hasn’t been in the situation or who would or has made a different choice. I am in such support groups, and just the same as you, despite my heartache I would do it over again, the same 1000 times, because it was right for my family.
    I guess I follow your blog to remind myself that grief is universal, in the same place, you and I would have, and ultimately did, make different choices. But we love our daughters the same, and have been through a lot of the same grief processes. I don’t believe I love my daughter any less than you did.

    • I think being faced with a fatal or likely fatal diagnosis is a different story all together. I was eventually given that scenario… at 27 weeks. I didnt have a choice at that point to continue or not. I belong to a support group that caters to those who carry a baby with a fatal diagnosis. I feel a little like an imposter in that group because most chose to carry, not had not choice to carry, like me (and yes, there is a lot of religious overtones which sail right over my head). Frankly, if I was told all this info at 20 weeks- i dont know what I would do. I admit I dont know what decisions I would make until faced with them. THe one area I did have a choice in was when my baby simply had Down Syndrome, which is not a fatal or likely fatal diagnosis in itself. I think I am pained seeing the link and not knowing what people are writing about it. Of course my mind goes to the worst (like you said, we read into what other people say). And I’ve always worried that writing my difficult journey would influence others negatively. I want peple to know about my daughter and not think of her suffering, but think of what good she brought (I need others to see that, so I can continue to see that. I dont like to think of my baby in pain) Since I can’t see what is written, this post I guess is a plea, to assuage my fears. And you have given some insight on what people might be writing about, so thank you.

      While I was pregnant, this article was floating around my facebook feed: http://www.slate.com/articles/double_x/doublex/2014/02/abortion_as_end_of_life_care_why_i_chose_a_peaceful_life_and_death_for_my.html A lot of people in my Ob world were sharing it in a supportive way. I too support this article (i hope that you find some truth in it too?) But it also caused some pain reading it in the final weeks of my pregnancy because it assumed my baby would be suffering her whole life- which was hard to hear because, again I didn’t have a choice once we suspected my daughter’s lungs would be underdeveloped. And because we knew her prognosis was poor, we were very clear with the doctors- if she isnt responding, we want to know so we can take her off life support and let her be in peace. You and I have actually shared a decision- when to let our babies go- something a parent should never have to do. It’s the most loving act to do so thoughtfully when you are thinking about ending your child’s suffering. I don’t believe you love your daughter any less.

  5. I think it’s just such a loaded topic, everyone has an opinion on abortion whether they have experienced a situation related to it or not. It’s really hard when I tell people my story and they explicitly tell me that I made the wrong decision, or that in my situation they would not have done the same thing. It’s not like I would ever walk up to a mum in a NICU who is struggling, heartbroken, watching her baby die and say “haha, you could have avoided this!” So why is it ok for people to comment on my choice? I don’t understand why it has any relevance to my grief at all. At the end of the day she died. It wasn’t about if it was about when and how. I think you’re right in making the comparison to taking Mabel off life support, and me ending my pregnancy, it’s a similar choice, unfortunately for me it comes with a label of “Abortion” or “termination”. Sometimes I wish I was selfish and tried to bring her to term so I could have met her and held her alive, but that wouldn’t have been fair to her, given that we were in a situation where we were explicitly told what that would entail, and had a choice whether or not to let it happen. Sometimes it feels like it’s so unfair that I when I say I had a daughter who died, people automatically become less sympathetic when I say it was at 23 weeks and she never lived. Sometimes I wonder if giving her a few hours would have let me be more entitled to my grief.
    I hope you get some replies from people in the group, to help you understand why, perhaps they are reading and commending your braveness, perhaps someone has a diagnosis of T21, with similar added complications, and to be really honest, maybe they are reading and being grateful that what you experienced with Mabel didn’t happen to them, sometimes seeing someone be brave having faced something so hard is reassuring. But if someone is reading it and using it to reassure themselves, then that’s about them, not you or Mabel. That’s not Mabel being a symbol of why it’s ok to abort a baby with T21, that is purely about the other person and them coming to terms with what they need to decide. Try not to think that you or your story holds any responsibility over what they are thinking or feeling.
    That link was brilliant, thankyou, it is such an accurate summary of what it’s like to need to make that decision.

    • I like what you said- it is purely about the other person. Sometimes I get do lost in my grief and the unfairness of it all, its hard to see anything outside the context of my own world. I tell chris all the time, I feel so selfish. It’s still hard for me to think outside myself.

      I also think you’re right about how people seem to place a certain value on our children’s lives depending on the circumstances. I recognize it is more “acceptable” for me to grieve outwardly because my baby was born near term and born alive. But sometimes I worry people think she not worth grieving over as much because she had DS. That might be playing into some of the feelings I had here. That DS doesn’t make here life any less valuable (in my eyes!). Just like mourning your little one shouldn’t be less because she had insurmountable health issues.

      I recognized how grateful I was to have such support in my grief when writing with someone who experienced yet another miscarriage. And someone with infertility. They grieve so much more silently. We, who have experience loss understand how universal grief is no matter when the loss happens. Grief is grief.

      I’m glad you liked the link. I hoped it would be validating. I found it a well written representation of perspective not often written from

      Also, in the medical word “abortion” is technically the word for miscarriage too. Spontaneous abortion, missed abortion, threatened abortion. Therapeutic abortion is the term for termination. The word abortion is so so charged yet also has a very impartial meaning, technically. If there were someway we could come up with a word used to describe situations like yours- more sensitively- that could convey a story, not just a label.

      Thank you for all your thoughtful insights.

      • I hope it’s okay to follow up in this commentary, Meghan, as you are promoting a ton of learning.

        The language heart in me sought out more info on the etymology of “abortion.”

        This was of interest to me…
        http://www.etymonline.com/index.php?term=abortive

        Abortive was also used to describe sunsets. Literally amiss plus appear, be born, to arise.

        Quite poetic and realistic for situations being discussed.

  6. I’ve been sitting with this topic since we found out about Owen’s *tentative* diagnosis at 16 weeks. At the time, we were advised to wait to make a decision regarding termination. His cluster of symptoms pointed toward a few syndromes too rare to really make a diagnosis accurately after only one ultrasound. At 19 weeks, when we went back for the U/S that would determine whether we would TFMR or CTT, we had pretty much already decided that if we couldn’t have a reasonable degree of certainty that Owen had a lethal disorder, I would carry him. The U/S was inconclusive. In fact, our MFM told us at the time that there had been good growth in the chest and he no longer recommended termination. 5 weeks later, he told us he was wrong at 19 weeks; he thought Owen was going to die based on his thoracic circumference and rib length at 24 weeks. BUT, we were committed at that point, and it was too late to legally terminate. We could have gone out of state, but we had already done enough research to tell us that we couldn’t be sure of life vs. death via ultrasound in THIS INSTANCE. It wasn’t until 33 weeks that everything (the constellation of heart defect and rib deformity) really started to indicate that Owen was likely to die. I’m glad I carried him, and I don’t have regrets. It was the right decision for our family at the time given the information we had, but I won’t do it in our next pregnancy, especially since we know that the condition we carry is lethal.

    I had a hard time reconciling those two facts after Owen died. If I would terminate a pregnancy with the same condition, did it somehow invalidate Owen’s life? No, it didn’t. Carrying Owen was right for us at the time, and I will always be glad to have loved him and held him for his brief life. There was another woman who I “met” on babycenter who was due around the same time I was. Her son had the same disorder mine did, and she chose to terminate at 21 weeks. Sometimes I wonder if she looks to me and feels more secure in her decision. I’m also in a group for women who CTT despite a fatal or very poor prenatal diagnosis (are we in the same group???). Many women in that group carried pregnancies with lethal diagnoses for religious reasons (some for other reasons too–it was a diverse group). Not a single one of them ever made me feel uncomfortable at all, but I also did sometimes wonder if I “counted” as one of them because I felt and feel like termination would/is a viable choice. I very much felt like I was straddling two worlds. We didn’t CTT for religious reasons (neither my husband nor I believe in god), but we DID CTT…and that seemed to set us apart, even though I sometimes empathize more with moms who TFMR.

    Ultimately, if this experience did anything, it made me more pro-choice. The decision to terminate or carry is never made lately, and it’s rarely black and white. Carrying a pregnancy with our types of diagnoses is also incredibly emotionally taxing, and I don’t think anyone should be forced to commit to that. I was able to research and understand quite a bit more because of my medical background, especially being in the NICU. Most of the knowledge I had about Owen’s chances and condition came from my own research and reaching out to other experts. My MFM gave us virtually no information, and if we had relied on him, we wouldn’t have been able to do genetic testing to get a concrete diagnosis. Like you said above, I am pro-information. I think no matter what decision a woman makes regarding a pregnancy with a variably lethal or definitely lethal diagnosis, she should be able to make a decision with all possible information available (especially if the diagnosis is very tentative, as ours was). I have a lot of feelings about this. I’m trying to get a blog post together about it, but the controversy makes me uneasy. I also don’t know that I want to give a window into our decision making process since we are likely to face this decision again if we choose to have more of our own babies. Thank you for the slate article, it articulates a lot of what has been heavy on my mind as we talk about more kids.

    I’m going to end this by being completely honest about our decision: I don’t think Owen suffered. He seemed very peaceful in death. But I also don’t think it served him well to go through the trauma of being born only to have to confront death at 5 hours old. If we knew this would be the outcome at 19 weeks, we wouldn’t have carried. I don’t think it would be fair to our future babies to carry them if we know they will die.

    • Thank you for such an honest response to this. You articulated many many thoughts I had. I’m super nervous about posting about such a hot topic, but so far the conversation is good! I want to be supportive of everyone hard choice but I think I just don’t want Mabel to be the poster child (thanks Emma for coining this term perfectly for my thoughts) for terminating for DS.

      I’m still struggling with the unfairness of saying yes to DS, when most people say no only for my baby to be taken away.

      I often wonder about future pregnancies too. I want leave the door open because I really don’t know what I’ll do until faced with decisions. I would have some heartache if I have another DS diagnosis ONLY because of the worry it would cause me. I don’t know what I would do if faced with another lethal diagnosis (or even possibly lethal). I figure I’ll cross that bridge if I have to.

      Thank you for sharing!

      • I understand exactly what you’re saying about not wanting Mabel to be a poster child for DS terminations. I actually feel this way about the (very few) number of people whose kids either have or are at risk for inheriting EVC. I did all my research, and EVC usually results in living children with a good quality of life. We desperately wanted our little EVC baby. Unfortunately, we carry a very severe form, but I do hope that people who come across my blog who also have tentative EVC diagnoses will be equipped with the proper information to understand that a life with EVC is absolutely a life worth living. I also struggle with being resentful that there are people with milder (read:survivable) cases that choose to terminate when I would absolutely give anything for my little EVCers to live.

        For what it’s worth, I don’t think Mabel is a poster child for DS terminations. I think you are both a testament to completely unconditional love and strength. I hope that people look at your story with Mabel and see how beautiful their story could be.

        I hope I didn’t hijack your point! I really just meant to say “this topic has been on my mind too,” but my comment became much more than that!

      • no hijacking at all! Thank you for your kind words. I was nervous about this topic but I have really enjoyed the conversation it has sprung. I have learned and the comments have really helped better put my feelings into words.

  7. Just came across this post.

    Please Meghan, don’t fret one minute over that posting on Baby Center in that private group. I wrote that post. And your loss and carrying to term was not used to show anything negative about you, your choice or Ds in general. I posted your story only to show another side, another choice of what one woman decided to do — to carry to term; there was no judgment. I think I can safely say that the majority of our group who have elected not to carry to term when given the Trisomy 21 diagnosis realize that ending or continuing such a pregnancy is an individual decision for the mother at that point in her life made with many personal considerations.

    There is absolutely nothing for you to feel bad about in your grieving your loss of your baby who only lived hours or making the choice of carrying to term. Nothing. Religious conviction aside, there are personal reasons why many women want to carry to term — I think you already know that. I don’t judge a woman who decides to carry to term knowing that she has a poor prenatal diagnosis. In fact, I actually think your choice to carry to term is accepted by more people in society than termination is. Societal ostracization and disenfranchised grief are powerful psychological punishers.

    I can only say that I am sorry about your loss … the loss of a very much wanted baby. I can also say that carrying to term was not the choice that was right for me. It is only when one has to actually walk in these shoes that the decisions become real. Terminating for medical reasons is undoubtedly a heart-breaking choice.

    There is support for women who carry to term and also for those who don’t, but sometimes it’s more difficult for those who don’t carry to term to speak openly about their loss, their decision to end a pregnancy and to have that loss ever be accepted by others.

    • Thank you SO much for responding! this is honestly what I hoped for- my imagination is my worst enemy, and so reading your response has helped quell my fears. Also some of the other comments were helpful to in just re-organizing my thoughts. I think it’s never an easy decision to terminate a pregnancy (regardless of the reason). I held many hands and listened to many women as the wrestle with the decision. And I want to be respectful of women’s choices. I think I was most worried, as one of my readers put it, that Mabel would be the poster child for termination. I think this post and the responses (especially yours!) has helped me see other perspectives and realize that that’s not the case. so thank you so much for your openness and sharing.

      • All I really have left to say is that at the end of the day regardless of our choices, we are both left with broken hearts and empty arms … ❤

  8. I am another member of the Baby Center board that Elizabecetera spoke about and you mentioned in your post. Two years ago, my husband and I made the heartbreaking choice not to carry to term our daughter. She is missed every day. I am so sorry for the loss of Mabel and please know that we wish you only the best. ((Hugs))

    • Thank you so much for sharing. I hesitated about this post, but getting all these responses have really reaffirmed by belief in humans. I’m sorry you too had to endure something hard.

  9. God bless you and all women who have to face that difficult choice. I try not to judge either. My nephew was supposed to be a downs baby. He is now entering a very prestigious college. I’m just saying that some of the tests can be wrong. The family as a whole along with the doctors should make an informed choice. Period. It does not matter what those who are not involved think. Get the information and decide what is right for the family.

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s