Moral Dilema - Chronic Pain & Pregnancy - Advice Desperately Needed

[redclover]

I'm new to this so hope I get it right as this is my first post. I've heard a lot about Mumsnet predominantly on Radio 4's Woman's hour & other press.

I am not a mother & I'm not pregnant. I have a massive decision to make & I feel very isolated & overwhelmed by the magnitude of it.

I have a medical condition called Complex Regional Pain Syndrome / Reflex Sympathetic Dystrophy - in brief I have been in constant pain for 7 years following a road traffic accident. Previously a high-flyer I have had to stop work (now I volunteer as a Princes Trust mentor helping young people leaving the care system & with local social services helping abused & neglected children).

I have to practice pain management techniques e.g. pacing in all that I do & have to take strong medication to help reduce the pain. I have had 2 unsuccessful back operations, have attended 2 pain management programmes, done extensive one-to-one work with a Consultant Psychologist (predominantly CBT), & practice relaxation & stretching techniques everyday plus healthy eating & no alchol.

Unfortuantely I am still in significant pain. However I have battled severe depression & physical injury to claim more control of my life & to make a positive contribution to life. Don't get me wrong, things are hard but I do still laugh & cry like everyone else & my life is not without meaning.

I am now 34 & have been married for a year (we've been together for 10+). Our relationship is strong & has weathered very tough times due to CRPS & life..., he is wonderful despite finding my pain upsetting & frustrating to deal with.

We are now considering whether to start a family. I think that were I well there's a good chance we would have already done so (who know's).

This is a major decision as my pain medication would have to be stopped due significantly increased risks to the baby e.g. one medication I take is know to cause death to the baby in the third trimester.

In the past when I have had to come off of a medication or have had an ineffective medication / significant increase in pain I have become suicidal as the pain becomes unbearable - thus I know I can not manage with no medication at all.

I have discussed the issue with my consultant & he has advised me to go all out to improve my fitness as much as I possibly can before trying to get pregnant & to stop all medications. BUT he recognises that I will need pain relief to which there is only one solution...

That is that I continue to take morphine if necessary (I have been on constant morphine for 3+ years).

The problem with this is that the baby will be born morphine dependant - which make me feel sick to my stomach. This is treatable & it should be noted that there is a distinct difference between 'dependent' & 'addicted'.

There is VERY LITTLE information available about women with my condition having babies, they are usually older women (men too). There is a case study on associatedcontent.com & other bits & pieces BUT even the British Pain Society has nothing!

As a result I feel not only horribly guilty for contemplating giving birth to a morphine dependent child but also horribly isolated. In addition I've asked my GP & family planning nurse if they are aware of extra support I can fall back on if I get pregnant & they said there is none. If anyone reading this has had or is having the same issues I would love to hear from you. If anyone knows who I can access support & information that would be wonderful too.

Please try not to pass moral judgment on me without consideration of all of the facts. There is no long-term negative effect to babies born morphine dependent, although they are sometimes of a lower birth weight. The treatment to end their dependancy involves neonatal morphine being administered 4 times a day for approximately 12 to 21 days. Not all babies will experience withdrawal symptoms & breastfeeding is not at issue - i.e. it is safe.

There is a chance that giving birth could cause my condition to spread / worsen BUT this is manageable with a good birth plan & team but I don't know how to go about putting this into place - ideas would be very gratefully received.

I am aware that a child with a sick parent might have issues when growing-up but I feel I have a lot to offer & that I would be a good mother & that I would strive to ensure my child was affected as little as possible & that they have a rich life full of opportunities. Advice on strategies & things I should be considering would be very gratefully received.

All in all I feel confused & overwhelmed - I have noone to talk to & don't know anyone who has experienced this. I feel guilty for contemplating this & I know the time whilst trying to get pregnant & being pregnant will be very difficult if I can only take morphine. I am terribly dissapointed that there are no sources of support & very little information available & I hope that Mumsnet can help & be a much needed lifeline.

Many thanks for reading.

Hi,

I just wanted to reply to your post even though our situations are not exactly the same. I have multiple medical conditions and cannot stop taking some of my medication (alternative is likely death!) even though there is an increased risk of foetal harm. My DP and I are in the early stages of planning pregnancy. It is hard, isn't it? You just want the best for your baby and it feels bad not to have control of that.

From your POV I would say there are lots of positives:
consultant isn't saying don't do it.
morphine dependency in babies is a relatively commonly encountered condition, usually in Mums who are not in good health/well nourished and outcomes are OK, hospitals are used to it.
pregnancy doesn't last forever, maybe you could get extra support from a pain management service as you gear up (sorry if that is a rubbish idea).

I have also been told that as a risky pregnany person there is a lot of support out there, including weekly multi-disciplinary appts and regular checks, so you are unlikely to feel unsupported.

Good luck.

Just realised that your post has been duplicated, so I thought I'd paste my response in here too:

God, that's a tough one to have to face up to, but personally I don't think it's a question of morality. I don't pretend to know anything like enough to really understand - long-term effects, the difficulty of the process itself etc - but as you say, a morphine dependency can be addressed.

I do think that you need to keep in mnd that not only do you have a lot to offer as a mother, but that your husband will no doubt have much to offer as a father.

How mave the medical professionals responded to you? Has it been presented to you as a moral dilemma?

I have little to say as I know very little on the subject. The only thing I wanted to say is that I certianly wouldn't judge you for making the decision to have a child, I hope it helps as I know how it feels when you feel ashamed by the potential reaction of others to your life choices. I wish you all the best.

Hello - I've just realised that my post has been duplicated! Sorry for any confusion (it's my first go!). The other one is

www.mumsnet.com/Talk/pregnancy/895241-MORAL-DILEMA-SHOULD-I-GET-PREGNANT-Isolated-amp-i n-pain

Thanks for your support mrschigur, kitcat1977 (again:-)) & strawberrykate. I am truly grateful, already having your responses & insights is helping me to feel less isolated & to get my head around things - it's raising lots of points for consideration & is a huge help.

mrschigur I really feel for you & wish you all the best. You are right that to not have control is frightening, especially when there could be harm to your baby.

I am encouraged that you say there are multi-disciplinary appts & check-up's available. Do you know how I would access these as I keep being told that there is nothing (by my GP, FP nurse & consultant), I do appreciate that they aren't specialist in pregnancy so won't necessarily have all the answers; any advice you can give me on what I need to do & who I need to talk to would be great. Thanks.

kitcat1977 - thank you. I responded on my duplicate post!

strawberrykate, thank you. You are right, it is a horrible situation to be in. I think perhaps one reason I don't really feel I can discuss it with those close to me is that I haven't come to terms with it or made my own mind up yet, & so don't want their reactions to sway me.

Thanks again. Take care x

i would say it is worth cotacting your local maternity unit and finding out how they would approach your case.

i know from experience the different multi disciplinary teams that can be put together to support difficult pregnancies for all manner of reasons and it should be possible to find out how they would approach your case.

i have had similar feelings of guilt about pregnancy etc and worry over other peoples judgement of me. I have found individual hypnotherapy and NLP throughout my pregnancy has helped me stay positive and enjoy my pregnancy. Joint sessions have made the world of difference to DH and i and have enabled us to communicate better.

There is no easy answer and of course only you can decide.

I would say tho noone has a gurantee of a straightforward pregnancy, and many babies are born with difficulties or not the best start. It is a minefield of thigns that could go wrong. So what i am trying to say is that you might have a fab pregnacy despite all teh extra issues you deal with daily there is no gurantees one way or the other.

hope that makes sense felt a bit rambly. I am a bit emotional and due in 3 weeks, so apologies if it doesn't come across well.

Hi raindroprhyme

Thanks for your message it comes across very well! I'll make contact & see what they say. The hypnotherapy & NLP sound good too - were you able to get a referral from your GP?

You're right it is a minefield & that's just thinking about it. I hope you're able to feel happy about your decision now, I'm sure you will have chosen the right path. I hope your pregnancy has been as easy & enjoyable as possible, as you said things are never straight forward.

Best of luck with everything - you must be so excited! I'll be thinking of you x

redclover

FYI I had morphine when pregnant (fibroid degeneration), was maybe a lower dose as alleviated pain a bit, however baby was, and is just fine

I am no expert but wanted you to know

good luck with everything

Gosh, what a tough one for you.

I would see your specialist, for your back, and get their advice as to the likely effects of the pregnancy on your back/health.

I would also ask to be see an obstetrician, who could advise you how your pregnancy would be handled, and potential birth options. They might want to do an elective cs, since although it's a major operation, it's in some ways more 'predictable' than a first labour.

People's reactions to drugs in pregnancy can be extreme. The point is that of course in an ideal world no-one would touch them, if you need to take drugs in pregnancy it's always going to be because there are positive health benefits to the mother that outweigh any possible negative effect on the baby.

It must feel like entering into the grey unknown, but I think you'll feel much more comfortable about it if you've spoken to the professionals who will look after you first.

Very best of luck to you and your husband.

Hi Redclover

I also had morphine while pregnant for kidney complications, and my DS was born dependent.

It wasn't nice to see DS suffering sometimes, particularly because a couple of other mothers on my ward overheard the MWs talking to me privately and assumed that I was a heroin addict , and because DS became jaundiced (but maybe he would have done anyhow), but it was over within a fortnight. He's now a perfectly wonderful 2 year old and I'm 28 weeks pregnant with DS2.

Wishing you well.

Oh, one other thing I wanted to add was that the bigger concern for me, if I were you, would be to find a pain regime now (i.e. before you get pregnant) that will be tolerable for you and compatible with pregnancy. Because once you are pregnant then it's too late to change your mind! I'm sure you've already thought of that, just wanted to raise it in case.

I have just cried reading your story, and it has made me realise how lucky I am.
I am 17 wks pregnant, and over the past few years had 'manageable' lower back pain.
However last week, I was stuck in bed, as I couldnt stand the pain, and doctors/hospital wouldnt give me any pain releif. They suspect a slipped disk? I am now walking (dragging my feet) and have made it downstairs, without pain relief.
I cannot begin to imagine how difficult it must be for you and your partner copeing with this for so long?
Or how hard it will be makin of one of the biggest, life changing desisions you will ever make!
I think you have already made up your mind that you are going to have a baby?
My friend recently spent the last two months in hospital, with morphine. Her baby girl was slowley whined off it, and she is now a perfectly healthy baby.
I'm sure you would have been told by now if it was out of the question.
As long as you know what to expect, and you and hubby have all the support you can get, then go for it!
I really do wish you all the luck in the world, and hey - we are women, and can do anything!!! right !!??
Keep us all updated, as I'm sure we would all love to hear how you get on.
Take care xxx

Hiya
I've suffered from a chronic painful condition for almost 12 yrs and I was really worried about coming off all my meds and coping with the pregnancy and the baby.
Well now I'm 25wks pregnant and I have to say that although its not easy I'm pleased to have got this far.
I had to come off my meds for a year before TTC and discussed the options with my consultant. There is limited pain relief when you are pregnant and I'm trying to cope with paracetamol and codeine. However, I have had to take the occasional dose of morphine not enough to affect the baby but it was still a worry.
As well as the 'normal' pregnancy worries you get a load more and some of the decisions are really difficult but my DH and I could offer a child a loving home and were determined not to be beaten by a crappy disease.

I agree with the others about the support system. We moved house to be closer to family and friends before TTC. To be honest, on a really bad day I lie in bed and worry if I can look after a baby. But I'm also very stubborn.

Good luck with your decision and I hope you can get all the information you need.

I have suffered from chronic pain since a RTA and I was on a lot of medication before I started TTC. I have RSD and extensive damage to nerves and discs. I was really worried but fortunately I fell pg really quickly and I found my symptoms decreased dramatically when I was pg though I have no idea why. The pain clinic gave me acupuncture throughout my pregnancy and I also got some hypnotherapy sessions to help me control the pain.

Hello - just a quick note before I respond properly later...

I really can't tell you how much better it makes me feel to have found people who really get what we're going through & who have had similar issues themselves.

Obviously I am desperately sorry that others have to experience it too but it is wonderful & so inspiring to learn that others are making it work for them - you're all so brave & I wish you all the luck in the world.

Thanks so much for taking the time to write to me. I've been away for a few days but will re-read your messages & reply properly soon.

THANK YOU x

Wow, am amazed at your strength and presence of mind - there must be no decision that is a simple one for you and your husband. I also seriously think no-one would judge you.

I (without any real medical conditions) found pregnancy hard with sickness, carpal tunnel, tiredness etc, but the amazing result was SO worth it - I think you have tons to offer a child and if you can get the support that others have suggested (I also went to a hypnotherapist as well to try and manage without pain relief, might be worth a try in addition to your hypnobirthing - I'd wanted that but couldn't find it locally).

And I really wouldn't worry about what any other people think about your situation if at all possible, you know your own story and that's enough.

What a horrific thing to happen to you all those years ago, I wish you the best xx

Hello

I've had a hectic week so apologies for not replying sooner/as promised.

To porcamisera thanks loads for your message, I've heard that sometimes babies are born without dependency - was that your experience?

vanlaodtovenice it's great to have so much good advice - thank you. I will ask for a referral & take it from there. I've been thinking about what you said about people?s attitudes to drugs in pregnancy being extreme & have decided that if we go ahead we would keep it on a need-to-know basis, especially in light of what happened to CinnabarRed

Hi CinnabarRed it's interesting to hear from someone who has experienced having a morphine dependent baby. It must have been hard to have people over hear the midwife; I sincerely hope they weren't judgemental. I know it's very personal & completely understand if you'd rather not say, but I was wondering / am very interested to know what the effect of the dependency was. Having tried to come off & reduce my morphine at times I've found it very tough however I can only guess at how a baby might be affected... Thanks for the advice re sorting out my regimen now - it's good to have it pointed out because the worries about the dependency seem to have taken over.

Thanks again x
I have to dash now but will finish responding later today x

Hi redclover
Have undiagnosed condition and am in very early stages of pregnancy. At worst am literally bent over with pain and at best very uncomfortable. Nothing compared to your situation tho but I just wanted to say that I think being pregnant strengthens your focus and will too. Even at my worst I will still think of baby first and it just gives me the strength to get through another few hours!

I just wanted to say that I dont think yours is moral dilemma - there is no right or wrong this is just how your life is. From all your responses you seem like a compassionate woman driven to provide the best for her child. We all have to make the best of the way our lives are and our children have to fit into our worlds. BE BOLD - take the chance! whats one crappy year for a lifetime of unconditional love. Plus you can write that crappy year off to proving how wanted, loved and fought for your baby was. You are already a fighter - get your regime sorted, information and support in place and apply the same determination you have so far. I think it will be a very lucky child.