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.

When I took this drug many years ago I had to sign a disclaimer too. From what my consultant told me the affects on the foetus are very serious indeed especially at any stage. I would not ahead with a PG in these circs personally but good luck with whatever you choose. x

duke hi - I crossed post with you.
I think it may be quite difficult for any professional to tell you in so much detail what may be wrong with your child if you decide to go ahead with the PG. I hope that dosen't sound strong, I don't mean to be, but I was told of the "risks" before I took the drug and my GP said that although they wouldn't be able to say what exactly may be affected, it will certainly do serious damage to the foetus. It would be impossible for anyone to tell you exactly what the outcome will be. x Good luck - hope you get more help soon

I don't think I could abort based on probability either but as Crush says it doesn't sound like anyone knows enough about this to give you the definitive answers you want. Good luck I hope you can relax and enjoy Christmas.

I just wanted to drop you a note and say I think your attitude is great. Hang in there and hopefully you will have some answers soon!

Thanks again ladies.

Babybump - I think you are the only one who thinks that!

xXx

What a hard choice to make. No experience, sorry, however I came on to say you seem lovely.

Hi Duke,

What you have written sounds very sensible to me

I just wondered if you had tried posting on the Mumsnet "Special Needs" board,with regard to anyone having any experience of having/knowing a child who has this syndrome?

(They are very lovely on there and have been helpful to me in the past)

((((Big hugs)))) Duke748, like babybump2b I have just read your thread and feel so sad for you that you are in such a horrendous position, I can understand why you want nature to take it's course. Be brave...

Ah lovely ladies of Mumsnet...... its so nice to have even a couple of people who have faith in me, even when I don't in myself!

For what it is worth, the opinions of people who think they would definately abort or definately keep it are also being taken on board. Of course its a deeply personal decision, but hearing others' views helps me too.

I will indeed post on special needs board, thanks for the suggestion.

xXx

More googling might have helped me come up with the answers to some of my questions:

About dosage:

"Daily doses in the range of 0.5?1.5 mg/kg were usually ingested in cases with adverse outcome but doses as low as 0.2 mg/kg or lower may also have caused teratogenicity."

My dose was approximately 0.21 mg/kg.

About timing of exposure:

"The critical period of exposure is believed to be 2?5 weeks after conception, but clinically it is difficult to establish the exact dating in many cases."

For me, I think I took the drug for 1-2 weeks after conception.

How long the drug stays in your body after you stop taking it:

"The time it takes isotretinoin to be cleared from the
blood varies. This is because some women use higher
doses and some women may not be using the medicine
as prescribed. Isotretinoin is not found in a woman?s
blood 4-5 days after the last dose. Most of its by-
products should be gone within 10 days after the last
dose."

Testing:

"A special ultrasound done in the second trimester of pregnancy may be able to see if a birth defect has been caused by exposure to isotretinoin. Ultrasound can detect many birth defects but it cannot tell if a child may have learning or developmental problems.

I presume this is refering to the normal 12 weeks scan?

At last some answers on which to base my decision.......

I was told if our baby had the suspected problem he would be incompatiable with life. We decided a short time with him was better than nothing. I understand totally about a m/c making the decision for you and I also think I felt I could live more with nature taking him after birth than chosing to get rid of him.

I wish you luck in finding out all you need to know and getting through this.

Well the info you have found re dose etc looks very promising duke, and you sound very level headed, so I think that you will make the right decision.

Fwiw I would go ahead with the pregnancy (and I've also been treated with a very high dose of roaccutane in the past).

Would your boyfriend support you if you did decide to go ahead, and will that be a determining factor for you or not?

duke748 it is a hard decision for you, but I do think that you would regret taking action on a theoretical risk to your unborn baby. You will never know whether you made the right choice, and it will live with you forever.

I have to say that I personally would not terminate under any circumstances, but I have refrained from posting until I made sure that my opinion was as objective as it could be, rather than just what I would do.

I am sure that you would be offered more detailed scans as a matter of course, anyway.

I get the impression that you have decided to continue anyway, so I wish you an uneventful pregnancy and labour!

duke - I've been reading but not posted as not been sure what/how to say it.

FWIW I think I would continue with the pg and let nature take it's course. I couldn't have a termination, not something that sits right with me under any circumstance (however I hasten to add that my personal feelings on the subject don't make me judge those that do choose that route, it's a totally personal matter and none of my business if someone else chooses to terminate for whatever reason). To me it's a baby even at this early stage.

I hope that everything goes well for you and that you get the support you need regardless of the decision you make and the outcome of it.

Hi duke - hopefully the referral will get processed fairly soon and you'll have the consultant visit as soon as the hospitals are up and running after Christmas.

Once you have a better idea of what you are dealing with you can then look at how to make your decision. You will have a better idea of what a child affected by this drug would have to deal with, in what ways they would suffer, in what ways they would prosper. Ultimately - you need to know if this baby is affected at all I guess.

Bless you and be brave and just wait. Very Very hard indeed for you. You're doing brilliantly so far, just keep as level headed and panic free as you seemed to have been so far. That said - you know where we are if you need a jolly good freak out!

What an awful situation for you to be in ... I do think you need to consider your boyfriend's wishes too though, it isn't just down to you as you will both be parents, not just you. I would speak to him, tell him exactly how you feel about everything and, if he still wants you to abort, I would take that into consideration.

My thoughts are with you. Take care.

you're doing what I would do, letting nature take its course. I would never abort a baby for 'abnormalities' (I have a severely disabled child) and the ones listed don't appear to be incompatible with life or even as something as serious as brain damage.
Good luck.

Hello Duke,

I have only just caught up with this thread, and what a brave person you sound. I will say now that I am in total agreement with you - I would find it almost impossible to abort a baby myself whatever the risks or some form of damage, to he or she...

I'm not sure what the more obscure problems are that you mentioned, all that about major vessels and so on - possibly they are awful things if they happen, possibly they are reparable.
The facial deformities I wouldn't bother about myself. I have a child whom I think has some facial abnormalities, I don't know if they were caused by drugs I took during pregnancy or not - it is possible, i took a load of things for severe sickness. but he's my baby and I adore him.

I am behind you on this and I really hope you do get through the whole pregnancy and give birth to a wonderful child.

Take lots of care, and good luck - will you feel supported by your boyfriend if you continue with the pregnancy? i hope so xx

Hello Duke,
If i'd never been pregnant then my advice would probably have been to abort, but now with a little one of my own on the way (38 weeks pg) I can now totally understand how you feel about nature taking its course. There are so many unknowns and it sound like you are right to get as much advice as possible.
May God bless you and hope you have a lovely Christmas. xxx

i would abort. I have had an early medical terminition and it was very much like a heavy period. It was for personal reasons, not anything to do with the development of the embryo - but for me - I would not want to put my child through a lifetime of disability knowingly - I know disablities can and do occur without our knowledge and we then deal with and live with them but you are such at early stage of pregnancy and you are being given this information early on.
A second trimester ultrasound is the 20 week scan - there is a vast difference between a medical termintion a few weeks in and aborting a nearly fully formed fetus.
I think you also have to consider your boyfriend in all this.

'I would not want to put my child through a lifetime of disability knowingly'
Disability isn't the end of the world you know. Most of us lead completely normal and happy lives.

i didn't say it was but it is isn't something I would knowingly inflict on my child - I don't think there are many parents who would.....

Hello ladies.

Thanks for your lovely messages - some of you seem to have more faith in me than I do in myself.

A few of you have asked about my boyfriend. He is a lovely guy and don't think he will be cruel or heartless, but he has said that if it was him he would abort. His opinion is pretty much what babyboy above said. He says he doesn't understand why I would take the risk.

We don't live together, live about 2 and half hours from each other and have been involved for about a year, but it only became 'proper' boyfriend and girlfriend in the last few weeks.

So, I am thinking that if this pregnancy carries on, it would be great if he and I carry on, and he is a support, but I also know that that might not be the case.

I know that he is a decent enough guy that if we are not together, that he will still be a good father. Even to a disabled child.

I am trying to take into account his opinion, but there isn't really a middle ground is there?

I have started to slightly spot today. {sad}

Happy Christmas Eve ladies.

xXx

Hi Duke

I went through a CVS with both of my DCs as they were thought to have Downs although I would have kept them regardless as it is a religeous and right to life thing for me.

BUT............

The final decision must be yours - my sister had a pregnancy ended at 24 weeks as her childs condition was incompatible with life and it was pretty horrific but I was there for her regardless as it was her choice - and to be honest she really didn't have another choice but to have the baby and watch it die a few minutes after birth - carrying a baby knowing that is going to happen is too much to put anyone through (from my stand point as a mother) - regardless of your religious or ethical convictions.

I really don't know what I am trying to say here - maybe that you have very admiral ideals and morals that you are being very gorwn up and sensible about such a huge decision and that should be commended. It is your baby and that is how I felt with both of mine as did my sister and you having to carry it and care for it for the rest of your life is something that you have to take into account and is why I think you don't listen to others but take it as a very personal decision - if it were down to either of the fathers of my DCs if they did have Downs I think they would have wanted me to abort but I wouldn't have.

Try and get a referral to Kings Collge in Dulwich - Professor Nicolaides there is a forerunner in his field and very knowledgable and understanding - their fetal and prenatal care department is excellent and they will probably be able to answer all your questions having dealt with things like this everyday.

I hope you get some reassurance from someone soon - and I hope you have as good a Christmas as you can in the circumstances.

Apologies- he expressed a view like babybaby above, not babyyboy. Sorry.