Tuesday 23 August 2011

No More Babies - How We Decided

I wanted to do a further post on this, now I am feeling a bit better, in the hope it may help others who find themselves in a similar situation.

The decision not to have more children was very much a joint decision. My husband and I were both completely terrified about what had happened, and we both found the journey through NICU very difficult and we both felt that what Joseph went through wasn't something we'd knowingly put another baby through. At first, I found it hard because nurses would often say "oh next tme will be much better, you will be better monitored", and I'd reply "there is no next time". We were quite sure from the beginning it isn't something we were prepared to do again. However, it wasn't a decision we made lightly.

I am strongly of the opinion that I would get pre eclampsia again, and this is an informed opinion from both my consultant and my lovely GP. I now have a firm diagnosis of essential hypertension and am on medication. If I fell pregnant I would have to come off this medication and back on methyldopa. Methyldopa is not my friend, it's evil. The alternative medication, Labetalol is contraindicated for asthmatics, so I would not be keen on trying it.

After Joseph's birth we were asked to have a follow up consultation with the chief consultant of obstetrics at our hospital, which we duly attended when Joseph was 7 weeks old. She was very up front about my risk and was fairly confident I would get pre-eclampsia again, and would get it early, and her plan would be to get me to 30 weeks.

Now 30 weeks is preferable to 27, however, its still a lengthy hospital stay, and of course, potential for complications for the baby. In addition, although unlikely with good antenatal care, as I have demonstrated in earlier posts, not every woman who has pre eclampsia survives. And my husband, in particular, is very fearful that I might die in a subsequent pregnancy. His fear is not unfounded, his cousin died in her third pregnancy and her baby was born very early and still has serious complications as a result of his prematurity.

The other reasons we have decided not to go again are very practical ones. A pregnancy now would not be fun. I would have a lot of additional monitoring and tests and there is the very real risk I could be hospitalised for bed rest, which with a toddler would be a nightmare. Also I found the side effects of methyldopa incredibly difficult to deal with. We don't have extended family on the ground, my parents and my sister are in Australia, my husband's are in Germany and Luxembourg, and we can't expect either family to drop everything and come and help, its not practical.

Then there is a possible NICU stay, and it would be very hard to do this with Joseph, children are only allowed to visit between 3 and 4 and 7 and 8. I would want to spend my time with the baby, and express, and having Joseph as well to care for and look after, this would be exceedingly difficult, and its not something we are prepared to do.

I am not going to see a cure or definitive treatment for pre eclampsia in my childbearing years, except the current cure which involves cutting your baby out to prevent full blown eclampsia. By the time I am an old woman I want to see the level of deaths from pre eclampsia at zero. I think its purely preventable and the only way we can do this is by education. We have the medical expertise but we need to find away to educate women in a way that is effective, but not terrifying.

Getting back to the point of the post, am I happy with the decision we have made? Yes. I think it's a good one. Being a grown up means sometimes having to make decisions that are tough that you don't want to make, but you have to look at all the information you have available, and work through the consequences of your actions. Am I happy I had to make this decision? No. I feel I should be allowed to have the size of family I want without constraint. I feel very bitter that this evil condition affected me, that it affects any woman. I hate pre eclampsia.

And that is why now, I am passionate about blogging, about sharing my knowledge and experience, and helping others.

7 comments:

  1. I loathe PreE and HELLP. My husband is totally against having another child after going through my almost-death and our son's 118 day NICU stay. Regardless, I am still open to the idea of having a child. My pre-e was extremely severe, but I was not getting proper monitoring. It was very sudden and my hospital really was negligent in my care. I'm sure with proper monitoring, it could have been a lot less worse. But you are right - it's a joint decision and with my husband so anti-having more kids, it's just the way it will have to be.

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  2. Jessi, I'd definitely see if you can talk an expert doctor. I am pretty sure you are probably 10 years younger than me, and that makes a huge difference in terms of risk (40 next year), and there are things they can do to reduce your risk of occurence. Just in my case, if it does go wrong, we don't have a plan B, we don't have Joseph's grandparents nearby (not even in the same country)

    It's very difficult for a mum to come to terms with, its different for dads I think, and dads can sometimes see the bigger picture, but at times I can only think with my ovaries, and they're the tearful days that end up in sad and angry blog posts!

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  3. I just wanted to say I think it's a hard but responsible decision you've made. Another journey through the NICU certainly would be tough. Especially knowing what you know now. I had a dream a few weeks ago that I had another prem baby in the NICU and it was really awful. I just kept comparing them all the time, saying things like 'no.. I'm pretty sure we had full feeds established by this stage last time' and horrible things like that. I woke up, immediately suggested my partner have the snip (which he refused) and thanked the powers that be that thankfully it was just a dream! Any way, I'm glad
    You have your partners support on this and hope that in time in will get easier for you. I know this must be a really tough call but for what it is worth, I think you are doing the right thing *hugs*

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  4. I just wanted to say I think it's a hard but responsible decision you've made. Another journey through the NICU certainly would be tough. Especially knowing what you know now. I had a dream a few weeks ago that I had another prem baby in the NICU and it was really awful. I just kept comparing them all the time, saying things like 'no.. I'm pretty sure we had full feeds established by this stage last time' and horrible things like that. I woke up, immediately suggested my partner have the snip (which he refused) and thanked the powers that be that thankfully it was just a dream! Any way, I'm glad
    You have your partners support on this and hope that in time in will get easier for you. I know this must be a really tough call but for what it is worth, I think you are doing the right thing *hugs*

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  5. Hey hun

    I think this is an amazing blog. Although its nothing compared to what you went through, I too am now concerned about another pregnancy as my BP has become very unstable and if it continues they will put me on medication.

    Methyldopa made me feel so ill and I feel it took away the last few weeks of pregnancy for me as I felt so ill and tired all the time. The labetalol was truly awful, worse than Methyldopa and a friend of mine now has liver damage from it during her pregnancy. If my BP doesnt settle I would seriously have to consider the effects of having to take this drug throughout anther pregnancy, I really wouldnt look forward to it.

    You have made a brave decision and one which I hope I dont find myself having to make, though am having to consider the effects of another pregnancy on both me, hubby and Jack (and the baby!). Its a scary illness. However one thing I will say is that even though you will only be a mum once, its better to be a mum once and be an AMAZING mum, than be a mum time and time again and be a rubbish one. Much love xxxxxxx

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  6. Hi Chassy, thanks for reading and commenting. Yes it is a consideration, the medications are tough. The one I am on now, Perindopril, is lovely and I've had no side effects at all, but my GP asked me a million questions about baby plans because you absolutely cannot take it in pregnancy, so I know I'd have to go on one of the others, and they are not nice meds.

    We have been so blessed with Joseph, he's a delight, and my support worker at the children's centre said "you can't have another, because Joseph would always be your favourite and no baby would be as special as him"!!

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  7. Dreams are weird aren't they? And you feel like you are right back there, I have had similar. And I think sometimes "better the devil you know" doesn't always hold true, I'd hate to go through NICU knowing what I know now. In some ways it would be easier, in terms of dealing with staff, and advocating for myself and my baby, but just the length, the complications, the ups and downs, horrendous, knowing what's potentially in front of you and not being able to do a darn thing about it, no, I couldn't do it again. I do hope it gets easier, but I think it will be one of those things that stays with me. Funnily enough I was chatting to a lady the other day who has a 38 year old son, and she was saying how sad she is that he is an only child....

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