Pregnant and being pressurised to abort for medical reasons - but my head says yes but my heart says no

[duke748]

Hi all.

I am faced with an impossible decision, but would really appreciate your thoughts and opinions on this, especially from anyone with any experience of similar situations.

I found out I was pregnant on Saturday. I am on acne tablets called isotretinoin which mean that the chances of my baby being born with severe 'abnormalities' are quite high. Medical recommendation is to abort.

Some googling bought up the following:

'29 cases of "adverse reproductive outcomes among women taking isotretinoin during the first trimester of pregnancy" were reported. Of the 34 exposed women reported, 19 experienced spontaneous miscarriage, and 10 babies were born with congenital malformations now understood to be the fetal isotretinoin syndrome.'

'Children with the isotretinoin syndrome often demonstrate facial asymmetry; serious external ear abnormalities, including microtia (small ear), anotia (no ear), or stenosis of the external ear canal; micrognathia (small jaw); flat depressed nasal bridge; and ocular hypertelorism (widely spaced eyes). The cardiovascular abnormalities commonly seen include conotruncal malformations, such as transposition of the great vessels and tetralogy of Fallot.'

I don't even know what half of that means, but its doesn't sound pleasant, does it?

Now, I think I am about 5/6 weeks pregnant, and know the sensible thing to do is have a tablet induced abortion, think its not meant to be and carry on with life as I know it. Its what the doctor and my boyfriend think is best.

However, I have this really nagging doubt that I could be aborting a perfectly healthy baby. I was only on a low dose of the tablet for 2 weeks. Or, if indeed the baby is severely disabled, does that give me the right to end its life? Is it even a baby right now? Or just a mass of cells?

I am so undecided. I would like to know if the baby is indeed disabled, however, I don't know if even that knowledge would make me abort. I worry about making a decision either way and regretting it for the rest of my life. I know that an abortion at 6 weeks would be less dramatic for my body and mind than one at 12 weeks, say.

I'm not sure I could actually go in and have the abortion, if you see what I mean. Actually book a date and turn up and go through with it.

I'm also not sure if I am mentally strong enough to look after a baby with special needs and all that that entails.

It might just be hormones raging through me, but I just want to protect this little one inside me, not kill them. But is that me being romantic and reckless instead of sensible and responsible?

I am just so confused. Any help or advice or anything would be gratefully received.

Thanks,

Duke.

[whomovedmychocolate]

Wow, what a hard decision! So it seems you have a 60% chance of miscarrying anyway which would take the decision out of your hands, or you could wait for scans or has CVS to see whether genetic abnormalities show up but one thing is for sure, you need counselling by a trained expert before you make any decisions.

You should wait a few days IMHO and ask to see someone to discuss options next week.

[WorzselMincepieYummage]

You poor love what a horrible thing to have to go though.

I have not been through anything even remotly simalar so don't feel i can offer you any advice but i think if i were in your situation i'd have the termination .

Of course you want to protect your little bean, its human nature and the wonder of hormones, not you being reckless or romantic, its what your designed to do.

If you chose to have the termination you wouldn't have done anything wrong atall but only you can make the decision about what is right and wrong for you.

[wrapstar]

Why not ask to speak to a specialist in this syndrome? I'm sorry you have this problem.

[cfc]

Oh Duke, I feel for you, I really do.

I know a friend of mine was on this acne drug and was warned to take full precautions not to fall pregnant as "they would have to abort anyway"....

I really don't know what to say, but I didn't want to read and run.

I think I know what I would do - but I also know what your instinct is telling you. I am so sorry this has happened (esp at this time of year).

Good luck with your decision. I think you should push to chat with either a counsellor or a Consultant who deals with these babies when they're born. I don't know how easy it is to get that info though.

My thoughts are with you x

[whomovedmychocolate]

I had an amnio with ds as he had high indicators for downs and we had a week of thinking we might have to have a termination at 16 weeks - which was horrible. Luckily he was fine but I couldn't think straight till we knew and so I can only imagine how tough things are for you at the minute.

[treedelivery]

Ask for a referral to a fetal medicine consultant at your maternity hospital - they will be able to offer you advice. Your GP is unlikely to have in depth knowledge of this and isn't specialised.

That would be in the line of work for the fetal medicine team and not outside what they are used to dealing with. All the things listed are conditions they can tell you more about.

You could ask to speak to your GP on the phone rather than trying to get an apt if it's very busy given the time of year. The GP can send a referral at your request.

[wrapstar]

I personally would probably opt for termination, partly because I would find it hard to cope with the idea that I had accidentally caused any problems.

What a hard and horrible decision.

[duke748]

Thanks for your messages ladies. I really appreciate you taking the time to write.

I have spoken to the doctor who prescribed the drugs at the hospital today and she has booked me an emergency appointment with my GP for tomorrow afternoon.

I have never heard of a fetal medicine consultant before, but will most certainly ask about seeing one when I see my doctor tomorrow.

[CoteDAzur]

Personally, I would abort. To answer your question, it is not a baby right now, it is a tiny cluster of cells.

You could also wait until you have a detailed scan at 12 weeks, and then abort if fetus has any of these problems. It will not be as easy a termination as taking a pill now, but at least you will not have aborted a perfectly healthy fetus.

[scarlotti]

Don't have any words of wisdom really, but like other posters just wanted to extend my support.

One thing to think about that might help .... if you were in a situation where you'd had the tests routinely given for downs etc. and they came back with a high risk then would you abort then?

Whilst some see it as a cluster of cells, others see it as a baby right from the start so neither is the correct answer, it's what's right for you that counts.

[treedelivery]

See your GP but be aware that this is such specialised stuff that only those who do it day in and out can offer the best advice for you. Your GP will agree I'm sure, unless they do happen to have this experience.

A fetal med consultant is someone who specialises in maternity, and then goes on to specialise in scanning, diagnosing, and offering management for babies who have problems in pregnancy.

Good luck with your decision making.

[whomovedmychocolate]

I would echo what others have said about fetal medicine consultants. Conditions which were untreatable even five years ago are sometimes cureable now and GPs don't have the most up to date info on outcomes in some areas.

[needmorecoffee]

don't know anything about that drug but the abnormalities don't sound life threatening or even disabling.
I would never abort for disabilities anyhow but thats me. I have a severely disabled dd whose disabilities were caused by her birth. She's no less of a person because of them.

[TwoCuteFestiveFairys]

totally agree with NMC, none of the abnormalities sound as though they could effect this childs quality of life IMHO, the main thing that would worry me would be cardiovascular problems, this would be the area that i would want to know as much as possible about.

Trust your gut instincts duke, if your hearts telling your not to abort then you probably have these feelings for a good reason, there are lots of parents here on MN that have been in similar situation to yourself who will support you.

[solidgoldprawnring]

Get all the information you possibly can before making your decision. And remember it's your decision, no-one else's. If your instincts are telling you that you want to give the pregnancy a chance then do so. If you feel that you would rather not continue the pregnancy in the circumstances, again that's up to you and not a wicked or unreasonable decision.

Hope you get an outcome that you can accept. Best wishes.

[NAB3hundredChristmaslights]

To me, it is baby, but it has to be your decision. You can't make it until you know facts not statistics.

We were told our baby might have problems but we carried on anyway. Others would abort. Everyone has to decide for themselves.

Good luck

[sparklingreactions]

im so sorry to hear that your in this situation and i just wanted to say that my thoughts are with you and your partner.

at 5/6 weeks the fetus wont look very much like a baby but if you had a scan a week later it begins to look like a baby. wether it looks like a baby at this stage or not doesnt change that it will become a baby.

before i fell pregnant i worked in a nursery with children will all kinds of diffrent mental problems, disabilities and malformations. before this my opinion would have been to abort but i have a very diffrentopinion on the situation now as children in this situation are capable of alot more and often exceed expectations of experts.

remeber that this is your and only your decision to make dont let anyone make you feel bullied or pressured into making a decision as there not the person who has 2 live with the decision made. i really hope you come 2 a decision you are comfortable with.

xxxxxxxxxxxx

[duke748]

Hi again ladies.

Thank you so much again for your kind words. I really appreciate getting different people's perpective on things.

The only people I have spoken to about it in RL are my boyfriend and the doctor at the hospital today.

For some reason I feel its too big and personal a thing to talk to friends about. The only friend who I usually feel I can talk to about this kind of thing is my best friend, but she feels very strongly about sex outside of marriage, and I don't want to feel judged on top of everything else.

In case anyone was wondering, I was using the contraceptive pill whilst on this acne drug, and took it every single day, though not always at the exact same time. I haven't been reckless, but that doesn't ease the guilt at all.

I think I will push to see the specialist as you recommended and hopefully have the Christmas and New Year period to reflect on things. I think, as some of you have hinted at, that if someone asked me right now my instinct would be to try to keep the baby and let nature decide, rather than me.

To answer someone's question, if I was told my baby had Down's I would not abort, but that is a condition I have some understanding about and is not that uncommon. The challenges Down's presents seem to me difficult, but not to the extent that it makes a life with Down's any less enjoyable for the child, just different. Its just the unknown I guess of this condition.

So, yep, I will find out a much as I can and then make my choices from there.

Thanks again.

Your words comfort me.

Duke
xXx

[MustHaveaVeryShortMemory]

So did 5 of the 34 women whose babies were exposed go on to have unaffected babies? Do you know how the dose you were on compared to the dose they were on? Not sure if you have this information but perhaps if you do see a specialist you could ask them. Good luck.

[TotalChaos]

I have taken the liberty of googling, and possibly these statistics may be a little more reassuring regarding the pregnancies that go to term:-

". Also as part of the PPP, women who were taking isotretinoin were asked to enroll in the Boston University Accutane Study (BUAS). Enrollment was voluntary and the BUAS estimated that about 40% of women taking isotretinoin enrolled. Over the course of the study period, 1989 to October 1999, approximately 500,000 women enrolled. Among that group there were 958 pregnancies. A large proportion of the pregnancies, 834, ended in termination (either elective, spontaneous, or due to ectopic pregnancies), 110 resulted in live births, and 14 had unknown outcomes. Of the 60 infants with available medical records, 8 had congenital abnormalities.[4]@"

www.medscape.com/viewarticle/492119

good luck, and best wishes for the appointment tomorrow.

[wrinklytum]

I'm sorry you are going through thisx

My dd has a genetic malformation and is developmentally delayed.It was not picked up upon on pre natal tests.

I HONESTLY don't know what I would have done if I had known before she were born but now she is here and a living breathing person I wouldn't be without her IYKWIM.She has a smile that is radiant and is my beautiful daughter despite her problemsIt IS hard sometimes ,I will not lie.There is a lot of support for her though (She is preschool aged)

Ultimately only you can decide.As others have said maybe a fetal medicine expert would be the way to go???No one will judge you either way whatever eventual decision you make xxxx

Wishing you all the best and sending a big hug xxx

Wrinkly x

[JodieO]

Forgive me if I'm wrong but you don't sound like you want to get rid of your baby, and I think it is a baby, just my view I know and I'm making no judgement.

I would see a specialist if you're unsure, not just a gp, you need someone with more experience in that field.

How would you feel if you went for a scan and you were told there was nothing there? Not trying to upset you but trying to help you work out how you really feel.

I wish you all the luck in the world and I hope everything works out for you.

[thaliablogs]

I agree with everyone that you should see a specialist. From my background I can say that it is likely that your embryo (it isn't a baby yet, at 5/6 weeks it has a heart and some differentiated cells but no other organs, no limbs, no brain) has been affected, and the effect of the trentoin is awful. You didn't do anything wrong, but you should seek advice and honestly I'd do it now as if you wait two weeks things may just get harder in terms of feeling pregnant, starting to show etc.

The effects of this drug are such that originally they would not prescribe it to women at all in case of accidental pregnancy. When I took it I had to sign a legal disclaimer saying that I would use protection and would have a termination if I did get pregnant (this was in the US).

At your 12 week scan if you continue they will be able to see some of the effect of the drug, but most will not be visible til 20 weeks or later, which is not when you want to schedule a termination.

i'm so sorry you have to go through this. I hope you have some support through this process - perhaps seeing a counsellor would help?

[treedelivery]

Hope you had a succesful visit at the GP and were able to make some useful plans as to how to go forward.

Thinking about you.

[duke748]

Hi ladies.

The GP, as we thought, was unable to tell me much at all. I just don't think I can abort on the basis of so few facts!

I had a list of questions, only some of which were answered. She will ask for a referral to the fetal medical consultant, which will probably be in the New Year. She seemed to suggest that this was a waste of time, but I insisted.

The GP listened to all my questions, answered some of them of them for me and even googled some stuff on the condition right there in front of me! Not filling me with trust, I have to say.

One phrase that got me was that taking the drug was 'incompatible with fetal life'.

The way I see if, if I miscarry naturally then, although horrible (I have had a miscarriage and I know its not pleasant, physically or emotionally) then at least I would not have taken the decision to abort myself. It would be nature's way of saying what is best for bean.

If that phrase means that I will miscarry, then I'd rather do that than abort. Does that make any sense?

Also, if its that one in whatever chance that nothing is wrong or only relatively minor issues, then I could never forgive myself for aborting. Surely nature has a way of deciding what is best for little one? Life, albeit possibly in a different guise to 'normal', whatever that is, or not.

I want to know when, if at all you can test to see if any of these abnormalities exist. I also want to know when in the fetus development the areas that are affected are created and how long the drug stays in the system.

Also - I want to know more about what life with a child who has these difficulties would be like, both for me and the child themselves. Would there be any quality of life for them? I'm not sure how one could measure that, but it certainly is important, to know if I could be strong enough to deal with this.

Until I have answers on these issues I cannot abort simply because the statistics do not look good, although I am getting pressure from all sides to do so. The GP today said that she seconds the original doctor's suggestion to abort. However, I found out that this is the first instance of this happening that my hospital with current staff have dealt with, so they are as much in the dark as I am!!!

I will look after myself over Christmas and the New Year period and hope that the right thing happens for little one. Whatever that may be. I will also formulate a list of questions to ask the specialist, to help me feel a little more prepared and in control.

I am also going to keep everything a secret from friends and family for now, as its so unsure and so contreversial.

It might seem like a very fatalistic approach to things, but its all so new that I feel I could 'afford' an abortion on the new year if needed, so don't see why I should do it now without all the facts.

If my bean in only with me for a few days or turns into a lovely baby and onwards to outlive me, or somewhere inbetween, I feel its not my decision to make.

I will continue to update you on my story, as you have been a great support in my dark times so far.

Sending big Christmas hugs,

Duke.

xXx