The unglow and the serious question

Edited to add: Thank you for a very civil conversation about a topic that has the potential to inflame some serious passion on all sides.  It certainly has given me a lot of food for thought.  I will come back with a personal take on it, but I just wanted to point you to one comment that stood out very powerfully for me - a personal take on the issue from a disabled 22 year old woman called Sarah.  What a powerful comment, what an amazing sounding woman.  Please scroll down to the last comment on page 4 here.  Sarah responds a few comments later as well

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Even by my very low standards, I have to admit that I am not looking at my best at the moment.  Not that my best is particularly outstanding, but Oh My Word, I am looking particularly unattractive.  No pregnancy glow here, only the sheen from my oily complexion.  My skin has gone to shit and I have pimples all over.  And of course, nothing fits me as I am at the in-between stage where you are too large for your normal clothes, and too paranoid about dead babies etc to buy maternity clothes. I'm a right old bundle of joy at the moment.

I would like to do a poll to gauge your feeling on something.  Its a very sensitive issue, but I would like to hear your opinion. It is question around whether you would terminate a pregnancy if you found out (conclusively) at twelve weeks, that there was something atypical* with the baby.  I will do a poll and you are welcome to add your comments.  Please make sure that they aren't offensive to anyone else.  If you do select 'other', please enter your reason in the little grey box underneath the word 'other'.

* I am very conscious of using the correct terminology, although I am not sure what the correct term is.  I am talking about irreversible chromosomal 'conditions' that range from the very mild (Down Syndrome) to the very severe (not compatible with life / life threatening)

PS  I am also very conscious of my many friends who have children who are 'atypical', and I want to assure them that this is not a judgement on who they are, who their children are, or what decisions they did or didn't take etc.  I hope I am not being insensitive, but as I approach my big twelve week scan, it is something that is top of mind for me.

Comments

[Jigsaw]

WOW. Talk about starting your day off with a tough question. I did not vote because I really am not sure what I would do and I suspect that I would not know unless faced with the situation.
Sorry i can't help (other than praying you are not faced with such a choice).

[Natt]

My gut feeling would be only if incompatible with life. But, unless I was in the situation I guess I cant say for sure.

Downs for instance can be very mild or very severe. It could come with only minor learning difficulties - or you could have the heart problems and other problems. You wouldnt know the severity from an early scan would you?

Also, like you I have 2 kiddies already. You have to think not just of you, Marko and the baby - but Kate and Adam too. If you dont terminate and there are severe problems after the baby is born it will obviously affect them too.

I know not all things can be seen with a scan/test, so you cant guarantee a healthy baby, but you'd have to look at the impact the baby would have on your life if there were a disorder of some kind. One of you may have to give up work. Or spend long spells in hospital. On paper these sound like superficial reasons to terminate - but I firmly believe you have to do what is best for the entire family, not just for one baby.

So yes, I probably would terminate if the baby had a chromosomal disorder. I wouldnt like myself very much but thats my gut feeling.

[Tripsmom]

If I offend anyone with my comment - my apologies - I do not mean to be offensive or insensitive.

My brother has a little girl - she is 9 years old. She was born with tuberous sclerocious (spelling?). Physically you cannot see anything is wrong with her but mentally she is still on nappies, cannot speak, needs 24-hour care as she does not understand danger and therefore will just walk into a pool, or accross the road etc. (like a 1-year old child). Her brain will never fully develop and allow her to understand or speak etc. because in the regions of her brain which controls "intelligence", speech, there are hard nodules/calcifications and dead brain cells cannot be repaired. She is my brothers absolute life. The last 9 years of my bother/sis-inlaw's life has been a living hell, even if they would NEVER admit it. Financially they will never be able to be secure because in South Africa "good" private homes for such children are very, very expensive. She goes to Camphill in Hermanus and receives wonderful care at exhorborant costs which are never going to go away. Holidays and weekends they look after her themselves and are on 24-hour duty. She also gets epileptic fits. I sometimes wonder it it would not be better for God to come and take his little angle to a place where she can understand and be "healed".

[Amy]

Your optimism is what keeps me coming back here...

Of course you wouldn't make such a decision based on a poll, but for what it's worth, I chose "only if the condition was incompatible with life," and even if that was the case, I'd probably have to get at least 3 agreeing professional opinions before I'd do anything.

My friend thought, on Tuesday, that her daughter (4 months old) needed a heart transplant. After a doctor's appointment on Wednesday, it turns out that she just needs open heart surgery ("just" - Ha. Ok, still a HUGE deal, but not nearly as bad as a transplant).

So, doctors are wrong. Frequently. And I'd hate to make a life or death decision without being absolutely sure of the diagnosis (how can you ever be sure)?

Then you read blogs about people whose babies had life-threatening conditions before birth, and were born just fine and lived. And you read about families who decided that if the only chance at life their baby had was in-utero, then they were going to allow her to live out the duration of her natural life....

I don't know. I really just don't know. I wouldn't terminate for Down's. But Down's is kind of the tip of the iceberg, in terms of genetic atypicalities.

Whatever happens, you'll do your best. That's all that you can do.

I predict LN7 is doing just fine.

I wish that you could stop worrying and just enjoy your pregnancy (ha, with the zits and awkward clothes and everything), but I understand why that's hard. Do you think, after the scan, that you'll be able to relax?

[Kim]

We found out at 12 weeks into a pregnancy (after IVF)that the baby had Downs and chose to terminate. I felt sad at having to make the choice and sometimes wonder what she would have been like but ultimately I don't really regret the choice.

[Chickenpig]

I was already put in your exact position. Thank whomever, I didn't have to make this choice. When you have twins, your resources...financial, time, etc...are already stretched and divided. I thought that having another baby was enough of a strain on the relationship I had with my boys as it was without having a child who would take up everything I had. If it was my first, last, and only pregnancy I would feel differently. Of course, no matter what the scans say I could have had difficulties with the pregnancy or birth that left us with a severely disabled child, but I couldn't knowingly put the boys through it...if that makes any sense. It is such a tough thing to even think about it. I wouldn't want to go back to 12 weeks if you paid me. I will be thinking about you every day and praying you don't have to make that choice... if the prayers of an agnostic/Pagan mean anything :)

[Melanie]

I know, without a doubt, that I would terminate. And I'd probably feel like shit for the rest of my life about it, but I know that I cannot handle that in my life. I am unstable enough as it is, and I know that I would be a piss poor mother to an 'atypical' child. So yes, I would terminate.

Does that make me a terrible, selfish person?

[Summer]

Using a cleanser with salicylic acid has really helped my skin, which went to shit b/c of stress and a move to a hot, steamy climate. I'm still trying to find an anti-aging potion I can use at night without my face exploding into zits; I've got a shipment of assorted skin goos on the way to me now. If anything works, I will let you (and the world) know.

Thinking good thoughts for you and Lucky.

[Cheryl]

My definition of "incompatible with life" isn't necessarily the same as the doctors. My second son was born with congenital heart defencts that if picked up earlier in the pregnancy would have led to the termination discussion. Because they weren't picked up until around 33-34 weeks the discussion never happened and he has turned out (mostly) fine. I know chromosomal stuff is different but if it's the nuchal translucency test vs the CVS I would go with the CVS because it won't give you a false positive unlike the NT which may give you a positive for something that is surgically correctable like a heart defect.

[Sara]

I voted "other", because I think there's a lot of space between "atypical" and "incompatible with life". I definitely would terminate if the fetus had a condition that was incompatible with life. I probably wouldn't terminate with Down Syndrome (when I was pregnant with my daughter, I was "screen positive" for DS on the blood test and had amnio at 18+ weeks. We had decided not to terminate regardless of the diagnosis at that point, but 18 weeks is different from 12, so even though I strongly suspect that I would make the same decision at 12, I can't be sure). If it was somewhere in between in terms of severity, I don't know what I would do. I think it's really impossible to know how you would feel until you're in that situation.

[amy]

I had the unglow with my son, very much so. He tried to destroy me, I think hahaha. J/k... maybe.

[Orange]

Can you buy something like the Desert Essence Blemish Touch Stick with tea tree oil? My husband and I both swear by it. It zaps pimples and shrinks them away to nothing better than salicylic acid or benzoyl peroxide, and it doesn't dry or irritate the skin. Mind you, it stings like hell when applied to irritated skin, but the stinging is temporary and then the skin is happier.

I would need to terminate for my own health even if it were a healthy fetus, so don't ask me about the other question. We had a scare nine years ago and thought Ben might be more likely to have Down syndrome, but I hadn't thought I'd terminate for that. Something like trisomy 13 or anencephaly, though, I couldn't have carried the pregnancy to term. Not after infertility.

[kristylynne]

I voted yes, and here's why. I'm 40, if I got PG right this minute, I'd be 41 when a child was born. Assuming that child had down's syndrome or another severe disability, his/her care will fall to my older child sooner rather than later should my husband and I pass away. I do not want to risk placing that burden on my son as a young man.

I know that some cases of down's are mild, and the individual can live independently. But I grew up knowing my great aunt, who had severe down's and could not talk and could barely feed herself. She was alo violent, which I know is atypical for down's, but her behavior was often frightening, and she injured several members of the family. She lived into her 60s, and for most of her life, she lived with my great-grandmother, who luckily lived to be 96. But then my great aunt spent the last decade of her life in an institution because there was no one to care for her. It was very sad.

[Heike]

A friend of mine had to make this very difficult decision at 16 weeks. Nucal fold, nose bone, etc were all fine on the scan. As she was 41 at the time she decided to have an amnio. Unfortunately the results were 98% that she would have a downs baby. She decided to terminate. It was the hardest decision she had ever made. But, she made it knowing that she was not that young anymore, and that here two boys would have to carry this very heavy burden. Not only that, statistically 89% of all marriages fail when an "a-typical" child comes into play.

She immidiately had her tubes tied, so that she would never be confronted with this situation again. But she still feels that she made the right choice.

I personally would terminate, as I believe I am not strong enough to carry such a heavy burden. 9 weeks of my baby being in the N.I.C.U was enough for my.

"Thankfully" due to early stages of cervical cancer, I had to have my uterus and cervix removed, and hence will never be in that situation.

Holding thumbs that all will be fine.

[Pamela]

I also did not vote on you poll. I seriously don't know what I would do when faced with that decision.

My husband and I have discussed it when we discussed having children and I know he would rather terminate (even for Downs) but I just don't think I could. One of his friends has a daughter with Downs and he says this has taken over their whole lives and he could not deal with that. I have, on the other hand met a number of parents of Downs chidren and ALL of them as have said their child is the absolute joy of thier lives. Hard work - yes, but then what children aren't in their own ways.

If the result was "incompatible with life" - as a commentator above mentioned I would probably want quite a few "second opinions" before I made any decision.

[Andrea]

I voted that annoying "other", with this qualification:

If the baby was very likely to die upon birth, or before, because of something like missing organs, severely deformed, etc., I might terminate. If it were some of the more severe trisomies, where the baby can live a few months but not longer, I probably would not. If it were a Downs condition, I would not.

I just had a post-40 baby, so I had to consider all of these things. I chose not to test, except for sonograms. I am deeply grateful that he is a healthy baby.

I understand this is sensitive, and what I think I can handle is not what others think they can handle. I suspect we can ALL handle more than we think we could, though (especially those of us that get our strength from something greater than ourselves).

How often have we heard parents say that their atypical child, or the child they only had for a short time, is the greatest joy of their lives? I would not want to miss out on that by terminating, when the chance for some life is there.

I would never choose to terminate with the excuse of, "An atypical child would be too much for our family." I think I can sum up that I would choose to terminate if it meant I was sparing the child a painful death out in the world.

[jacki janse van rensburg]

i voted 'never', because that is how i feel now, but i have thanfully never been in that situation. i think this is possibly the most difficult decision one can ever face!

personally i feel GOD has a plan for our lives, and that may include having a 'challenging' child. but hey, as i say, i have never been there... thank GOD.

one thing i do know, is that one can NEVER judge anyone else's choice. i pray you may never have to make this choice too.

[Aurelia]

I would terminate, for any condition that was not repairable, like a minor heart defect, etc...but it would be very very difficult. I did make the incredibly difficult decision to terminate for a trisomy 18 diagnosis at 21 weeks, but we had no idea until just after 18 weeks, and the nuchal test didn't exist back then, so it might be easier to do it earlier. I know that seeing the baby move so vigorously and knowing that the nuchal was small was very very reassuring in subsequent pregnancies. (A baby that shows vigorous movement is highly unlikely to have a chromsomal diagnosis.)

I do worry that some women are not informed by their Doctors that an atypical diagnosis isn't just about the babies health, but about their own. You see, a baby with a birth defect also means a placenta with a defect, (since they all come from the same defective group of cells originally) and that can affect the likelihood of developing pre-e, blood clots, placental tearing and bleeding, and possible strokes and other health issues with the mom.

Many women believe those risks are worth it for a baby with problems, and might carry the pregnancy to term anyway, but some cannot take the risk, and informed consent really is critical to making the decision. In that case, I really hope the OB in question would engage in extra monitoring to the woman's placenta, and not just the fetus, and possibly prescribe heparin and baby aspirin to prevent clotting, and perhaps vaginal progesterone to lower inflammation.

I say this because I know one woman personally whose baby was diagnosed with a bad nuchal, but the baby passed the amnio perfectly. Much later on in the pregnancy an ultrasound discovered that the baby did have some problems, a genetic condition that could not be picked up by amnio, but nonetheless was extremely serious. She opted not to terminate because noone could tell her for sure what was going on, but was never told that her life might be at risk, even after she went blind in eye. The Docs kept telling her that it unrelated! Meanwhile, it wasn't...they have now spent thousands on health care costs for their disabled daughter, and my friends sight is just returning.

Anyway, my point is not to scare you Tertia, only to say that these decisions are complicated, it isn't just about the health of the baby, and only you can make them for yourself. Whatever you decide, you know that I'll be here for you.

[catherine illian]

I personally am horrified when people terminate for Downs and other mild genetic disorders. CHeck out my friend's blog www.pennybecker.blogspot.com about their child with Downs. while it has been difficult she is an incredible kid and I'm sure they can't imagine life without her--
When there is no way the disorder will be compatible with life-- I do understand early induction-- and birth-- but to treat a life in any other way but dignity and gentleness and respect is wrong and very difficult for me personally..

I know one couple who terminated their pregnancy with downs at like 22 weeks-- and had a public funeral and everything--I was and am appalled-- the child didn't have to die-- they did it---

[Stephanie in PR]

I voted "terminate if not compatible" but I think I'm changing my mind on that. I'm a religious person but this really has nothing to do with that, for me. I think I would want to know that I cared for and nurtured my baby during his/her time on this earth. As his/her mommy, I would want to know that I had done everything possible to make my baby feel safe and loved while I had him/her with me. I wouldn't expect everyone else to feel the same way so I'm definitely not judging. I just know that I when I thought my first baby was dying inside me (miscarriage at 12 weeks), it gave me comfort to know that my baby only ever knew warmth and protection. I don't think I could terminate for that reason.

I good friend of mine had a baby stillborn at 21 weeks with anencephaly. (I'm sure I spelled that wrong.) Anyway, I think the fact that she got to hold her baby and see him was a great comfort to her - knowing that all her actions towards little T were to hold him/love him/protect him. Yes he died before he was born, but that didn't mean he wasn't her son.

I don't know, really, because I've never been in that situation. But I think this is how I would go.

I'm praying that LN7 is very healthy!

[Shelly]

I terminated a pregnancy at 14 weeks for downs, based on NT and blood work. We had a long discussion with the head of the genetics dept. at a hospital here. Downs can be mild or it can be severe, some later testing can show more about what heart problems might be there. The severe part scared me. I didn't want to do CVS due to the possibility of miscarriage. It was heartbreaking but we didn't feel that we had the resources financially and otherwise to deal with this, our first pregnancy.
I have known two people who've had a downs syndrome child. The first one was a surprise, as my friend had no testing whatsoever (it was her third child) Her daughter was not severely affected (I don't remember the terminology) and she has been a source of joy and delight for the whole family. She is a great, happy little girl. The second family are friends of a friend. They knew that they were having a downs syndrome child (also a girl) and they did additional testing etc. This baby (their first child) was born with severe heart problems, they spent all their time in and out of hospital with her, and sadly she died of complications after heart surgery, at five years old. That couple has since split up.
It is a very difficult decision to make but it's a highly personal one. I believe that we made the right decision for our family...Do we have regrets? Yes.
But we test for a reason..To find out more and sometimes to make choices.
But I'm not a fan of CVS. BTW
Just my two cents.

[jane]

Hi Tertia,

Everyone has to make their own choices. But I would love to share my story (but this is too small a space.) But I did not do the CVS (with my quad pregnancy) because of the risk. But knowing I wouldn't reduce anyway I figured why do it. At the nuchal folds scan baby A was given a 1 in 10 chance of having down syndrome.

I was scared to death. Knowing I could never deal with any issues like that I was terribly worried. But I also (personal beliefs) wouldn't terminate so I waited. At all the following scans there were no markers, we had a fetal echo and all was well. We felt a huge relief.

After having the babies at 26 wks, and Anna (baby A) being the healthiest we were thrilled. After James passed away the doctors came and said that Anna's tests were back (what tests?we didn't even know about them---with 4 sick kids I guess it wasn't a priority) but they confirmed she had down syndrome.

At first I cried but then I walked to her isolette and realized that nothing had changed. She was still my baby girl that was a week old. Nothing changed from the day before when I didn't know to that time.

And now, at age 5, she truly truly is the light of my life. She is a gift directly from God and I wouldn't change anything about her. She is so perfect and so beautiful that sometimes I cry just knowing that I was so scared. I know everyone says that special needs children are a gift and we all just nod our heads. But after having Anna I "know" what they mean. It is a mommy love so deep its beautiful.

If this was your diagnosis and you were struggling with the decision, ask me. I would love to tell you more. But I don't want infringe on your right to a decision. Just if you are unsure.

[Alison C]

I have chosen "incompatible with Life" as I hope that is the option I would chose in that situation but I am not sure I would really be that brave.

My own mother was advised to terminate both her pregnacies (myself and my brother) due to her own ill health and she refused which personally I am extremly glad off. I would like to believe I would be as strong as her.

But I could also never judge anyone who made a different decision.

Oh Tertia you have me confused!

Good Luck to you and LN7!!

[Rachel]

My husband and I have 3 children - want to guess how many are special needs? Our eldest has autism, yet for all the frustration she is truely wondeful. Middle child is the easiest - Tourettes'. Lots of OCD, nothing that can't be dealt with. Our youngest is the hard one. We know *something* is wrong, we just have no clue what or how severe it will end up being. Older children adapt, and do it quite well, and honestly speaking, it wil probably be good for your twins if you have another child to obsess over, (Okay, that sounded really crappy, but I honestly mean it in a nice way - you have stated several times that you think you might be an over the top/over protective parent. With younger children in the mix that becomes harder - I found it really helped to mellow my parenting style.) As for the divorce rates - very, very true and good point. But my husband and I and still married. Just because the odds are against it does not mean it will happen.

That being said - if the condition was incompatable with life and/or would lead to a short and painful life I would terminate immediately. I'm just trying to point out thay "bad" isn't always really that way. (and for the record, I am pro-choice. Whatever decision you (or anyone else) makes is *your* decision. I just wanted to point out that bad can be rather okay.)

[Emma in Amsterdam]

Before I knew it would be *so* hard to get pregnant, I would have voted "yes" without much thinking. I used to tell myself I'm not someone to raise a child with (severe) disabilities.

But... now that it took ivf/icsi and our only frozen embryo to have our healthy daughter (3 weeks old today!), I'm not that sure anymore. We had my blood tested and a specialized ultrasound at 12 weeks, and the results on trisomy 13/18/21 were not good.

However, they were not *that* bad (a chance of 1:200 for Down) and we decided not to have any conclusive testing done. I was too attached to this little person on screen by then...