Brittle/severe asthma and pregnancy - advice needed please!

Discussion of the practicalities and ethics of pregnancy with a severe illness - please don't read if you are likely to be upset by this.

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Hello everyone,

Before anyone asks - no, I'm not, but I would like to be in the not-to-distant future!

For folks who don't know me, I'm 28 and I'm a steroid dependent type I brittle asthmatic with steroid induced diabetes (treated with metformin tablets at present) and hypertension. I've been pretty poorly controlled over the last year with a number of admissions, some of which have been to ICU.

I realise that pregnancy is going to be, as my consultant put it, 'not *particularly* low risk'. In particular, the areas of concern for me are coming off the pill to get pregnant (as I have hormone sensitive asthma and have taken the pill continuously for the last 8 years - last 3 times I had a 'pill-free week', 8 years ago, all resulted in intubations) and the third trimester when pressure on the diaphragm becomes an issue.

My consultant has already told me that I need to be more stable and go a few months without any excerbations or admissions before I attempt it, and he's said that delivery would probably be by elective Caesarean section at about 36 weeks if I could manage to go that long.

We're going to the Obstetric Medicine clinic the week after next to see one of the consultants who specialises in high-risk pregnancies and get her opinion on whether it's a goer or not, but I would be really grateful for any thoughts/experiences that anyone on here has of being pregnant with brittle or severe asthma.

Should I even be attempting this? Is it fair to bring a child into the world who a) might be impaired or have medical problems if any of my conditions go out of control during pregnancy, b) may have asthma themselves, c) will have to cope with a mother with a number of severe chronic illnesses, and d) may have to cope at some point with not having a mother at all? All views welcome, but please be gentle, obviously this is an issue which is pretty close to my heart!

Heartfelt apologies if this issue is a senstive one for anyone or if anyone has been upset by this post. I did think a great deal before posting it, but am in real need of some practical advice and experiences from those who have been there and can't see any other way of getting it. (Medline and my text books have deserted me - not that much written on this issue!)

Thank you in advance,

Em

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Em,

Have sent you a pm.

Mia

xxx

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Hi Emily,

I can't offer any advice - I dont suffer from the sort of debilitating asthma you do and I haven't had kids! But I wanted to pop in a message of support. I know I tend to spend ages weighing things up and considering what would be sensible when i have a hard decision - then usually end up saying 'what the hell' and going with what I felt was the best option in the first place. For what it's worth (and not having been there I can't really talk), yes, there are the ethical considerations you mention, but although the chances of one or more of those situations happening in your case are higher than in most, even for the most 'low risk' pregnancy and with the healthiest parents there is no guarantee that something like that wont happen. So I dont think you can say you shouldnt consider trying to have a family just because the risks of something bad happening are higher than average - if it is something both you and your partner want. just my opinion tho.

Although I'm worried for you already given your responses to coming off the pill!

best wishes,

Ali

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Em

I have pm'd you 2

Hops xxxx

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i tend to forget sometimes and take it for granted that i have to fantastic children.

i cant begin to imagine what it would be like without them or not to be able to have children,

it must be very hard for you,

some children are bought up into a world of violence not loved or some even die from neglect,

so if a child is bought into the world out of love and is going to have someone to love it no matter what happens is far better than being rejected and abandoned by someone who don't care.

but if there is a chance for your health,please take care.

i hope you and your partner come to a decision that is best for both of you .

lots of love and huggles

mel xxxxxxxxxxxxxxxxxxxxx

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Em have PM'd you

Marmite

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Hope all goes well with the obsterics. Sorry havent got and advice but poss a little bit of hope. My firend had brittle asthma been in costa loads on itu twice last yr and one of those times pregnant and she has just given birth to a beautiful baby boy (well new yrs eve) bot mum and babu are doing well! She ws supposed to have a c section but actulally manged to have a natural (unplanned) birth and only had to go to HDU for a couple of hours then to normal resp ward.

That is my little bit of hopse for but everyone is different!!

ONce again good luck

love heidi

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Thank you so much to everyone who has posted or PMed me and shared their very personal stories. I've been really touched by the amazing response that I've had to this post.

Obviously we are going to have to think very hard about all these issues. I hope that it will become clear to me which is the right way to go.

Thank you all again

Em xx

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I am in exactly the same position as you. I have been liaising with my chest consultant and obstetrician and, on their advice ,have spent last 2 years coming off daily prednisolone. They said it would be possible to have a healthy pregnancy whilst still on it but obviously is better without. I am now off steroids after 10 years but still need a course every couple of months. Still on nebs/theophylline/singulair and have admissions to HDU/ICU. My admissions are two or three times a year whereas they used to be every month really. After reassurance from obstetrics I am confident that I would be closely monitored throughout. I think I would not manage to work past about 5 months of the pregnancy. I am a part time teacher and already get very tired from teaching and being a brittle asthmatic. Think pregnancy would make teaching even more difficult. If things stay as they are, a couple of serious admissions a year, we will be fine. However, my main concern is that if my asthma reverts back to the way it once was, my child would never see me, I would be unable to cope with sleepless nights and it would really put a strain on us as a couple. This is a big worry. I guess you just have to go for it. Our thoughts are now along the lines that we are both 30, I dont want the additional high risk complications of being an older woman whilst pregnant as this would put me into an even higher risk category. Therefore, the time to make a decision is fast approaching. I know exactly what you are going through. It's a difficult one. Speak to your consultant and see what they say. They would probably be able to assess if it's a possiblity. My consultant basically said that if my asthma had stayed the same as it was a few years ago, then his anwer would be to advise against it. However, asthma can change and mine , although still severe, is much better controlled and he now thinks that pregnancy is a very real possibilty. Good Luck. Please let me know how things go

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I have no experience of this having got my kids out of the way well before asthma was a problem. But my sister has had IVF and had to take 30mg of pred before and though-out the 1st 3 months of pregancy gradually coming off once she got to 3 months. I suspect then that pred and pregancy is not a bad combination. She was treated at the Lister so they should know their stuff,

Bex

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Em, I havent had the health worries you have but I just wanted to response to your concern about having a child with asthma or other medical condition. Sean was ventilated aged 2 days old with breathing probs and he was a term baby, he has battled with severe asthma his whole life.In addition to asthma the first 3-4yrs of his life were full of brain scans and other tests as he had development delay and was very floppy. Although things are pretty tough going at times he gets a real kick out of life, anyone who has met him will vouch for his endless infectious enthusiam and energy.This will sound odd but I really think his illness has made him the person he is today,he has social skills beyond his years and even questions docs in an adult manner at 11 lol. As his mum I worry endlessly about him but then I also worry about my daughter who isnt asthmatic. One thing I learnt early on is being a mum seems to be one long worry and guilt trip

I'm sorry didnt mean to turn into sean appreciation society post but just wanted to let you know having an little one with an illness can be very hard work but also very rewarding and a blessing as is any child.

Thinking of you loads and hope you can get all the help you need to make your decisions.

Julie xx

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Hi Em. In 2000 I became pregnant with my first daughter who is now 6. At that time I had severe uncontrolled asthma.I became pregnant whilst I was on the pill and was shocked and scared as I was getting married in the same year. I remained 0n 30mg of pred every day and from 41/2 months I ended up in hospital on constant oxygen and nebs. During this time I had alot of problems eg pred dried up fluid around her , she was small for dates and I bled on and off. at around 6-7 months Chloe stopped growing and the placenta slowly started to stop working properly. I managed to get to 34 weeks and then I had her.After I had Chloe my asthma improved lots and I then managed a twin pregnancy that was complicated but not due to asthma.Since then my asthma has continued to improve and now only flares up with infection or when its really cold.As for Chloe she has severe/brittle asthma and relies on oxygen 20 hours a day and she is allergic to lots of every day things. She doesn't let asthma bother her too much and tries to live life to the full.Chloe is very bubbly and fun to have around life would be so dull without her. The strange thing is I am an identical twin and my sister has brittle asthma too. She has just had a liitle girl last week and exactly the same thing happend to her but fluid didn't soak up until around 34 weeks.She also delivered her daughter by caeserean at 37 weeks. She also has insulin dependent diabetes. I hope this can be of help to you.I wish you well for the future.Nikki xx

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A tough dilemma. This is a related question - does anyone know what the effects of taking drugs to help osteoporosis are in pregnancy? eg; Alendronic Acid, Fossamax.

I read a recent newspaper report that said that these type of drugs were shown to have beneficial effects upto 5 years after use. Does that mean they could have potentially bad effects on unborn babies for that long too? All the patient information sheet says, is that they are ""contraindicated"" for women who are pre-menopausal. Not very helpful. I'm half terrified of finding out and I'm in mourning already, for something that may never happen. (Don't worry - it's just my age!).

[KateMoss]

RE Fosamax etc,

I was advised after my last DEXA scan not to try for a baby while on Fosamax.

It came on the advice from my cons with the scan results.

The premenapausal advise seems a bit vague on the Fosamax notes....

Kate

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Hi EmilyH - very similar name! I had brittle hormone related asthma during my teens and early twenties (over 20 years ago). I became pregnant on two occasions, and at that time was advised that termination was the 'safest' option - advice which I followed. Twenty years on I am still on the combined oral contraceptive, and have been referred back to the Brompton to look at alternatives. I have never had children. I wish now I had made different choices, and proceeded with the pregnancies, although like you I was full of doubt. Not the most helpful reply I know, and I know this post was made ages ago - wondered how you are getting on and what you decided? I. t's a really tough call, but I felt I wanted to (very briefly) share my experiences. Twenty years on I am better physically, but struggle with the psychological stuff......anyway, all the best to you. I hope you are able to do what you feel is right for you and get the support you need. best, (another) EmilieH