Pre Eclampsia support

For Women & their families who have suffered with Pre Eclampsia, Eclampsia, HELLP syndrome, Pregnancy induced hypertension (PIH) and related conditions.
 
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 My Dilemma

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Liz Pidgley
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PostSubject: My Dilemma   Sun 29 Jun 2008, 10:09 pm

I have received an email from a lady I shall call Jane as she has asked for some help but would like to remain anonymous.

This is her enquiry.

I am Jane & I am 39 years old and have a wonderful toddler and very supportive hubby.

When our baby was born I was 33 weeks pregnant & my baby had to be delivered in a rush as I had severe HELLP. I have some other medical issues which are not really related to PE or HELLP but have impacted on me as a person. All together I am in somewhat of a dilemma & am hoping you will be able to guide me in some way.

We have decided against having another baby. Our reasons being my hubby is worried about the impact it may have on mine & the babys health but I am worried for other reasons too.
Obviously I dont want to do anything that would jeopardise my toddler from having a fit & able mum.

We have seen a PE expert and know what our risks of getting it again are. We have had blood tests galore, all of which are negative.

My biggest battle at the moment is the fear. Fear of getting HELLP again & all that entails and the fear of not getting it again.
I know that might sound a little odd but I am afraid that if I dont get it again I will know what I missed out on with my toddler and feel bad because of the opportunities we both didnt get.
How will that make me feel about my children? I am afraid I might love them differently? I am afraid of the guilt I feel now let alone the guilt I may feel with the 'what ifs'.

Due to my medical history I am all 'counselled out' and cannot bear the thought of going through that again. I am hoping that there are ladies here that may have felt something similar & can offer us some direction.

Many Thanks
Jane.

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Every Woman is entitled to understand what happened in her pregnancy when pre eclampsia strikes. I hope to be able to support that process.
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Laurie
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PostSubject: Re: My Dilemma   Mon 30 Jun 2008, 8:34 am

Dear Jane
Back on the old forum we chatted a lot about guilt and fear, and about what happens when and if you do finally achieve that PE-free pregnancy we all longed for. I have two children, Joe (15 yrs) and Jim (8 yrs). Joe was born at 35 wks very IUGR (I had HELLP, too, undiagnosed - I went off with a very scary bang), with a massive head due to the "brain-sparing effect;" he was doing really well at first, but at 4 days he arrested and so had to have a lumbar puncture (bad) and loads more treatment. We sprung him from SCBU at two weeks - his dad is a doctor, so they let us take him, even though he hadn't reached that 5lb milestone - but he was back in at 10 weeks with bronchialitis and severe eczema. The first year was hell, he had terrible colic, never slept, and was a nightmare to feed and wean because of his atopic syndrome; and in fact I can't say the next eight years were much of a picnic, either, with regular allergy clinics, exclusion diets, daily nebulisers for his asthma and twice-daily skin care rituals. He had terrible attention problems at school, and I split up with his dad when he was three, which caused even more problems (not least because we were practically hermetically sealed in our two-person family unit, and he saw himself as the man of the house!). BUT, he is now a truly wonderful, easy-going, drop-dead gorgeous, man - walking his GCSEs and TALLER THAN ME!!!

Jim is my second son from a second marriage. He was born at 42+3 (another c-section for different reasons), 7lb 10oz, well behaved right from the start, slept and ate wonderfully, breastfed like a dream, surpassed every milestone. He's talented at sport, an average height and weight, has no allergies apart from hay fever, happy at school, deeply secure, the child of parents who are still desperately in love.

Until only very recently, every time I looked at Joe I felt a pang of guilt. I spend so much more time with Jim - for a start, he doesn't go away to his dad's house every Monday and alternate weekend. Poor Joe - he had barely turned seven and I was "taken away" by having to give so much more attention to the baby. And the time I spent with Joe seemed to be largely taken up with the "important jobs" - skin creams, medications, homework - or the serious ferrying around that starts happening as they progress through junior school. And one of the worst things is that the guilt got to its peak when he was 13, when he was naturally stand-off-ish and didn't want anything to do with his mum. I felt a complete failure. Now he comes home from school and gives me a great big cuddle, just like he did when he was five, and I know it's all OK.

I finally worked out (doh!) that more or less this is Planet Mummy - the HELLP/PE thing just complicates an existing issue. All my friends with more than one child felt guilty about the older one, and the more "invested" they had been in the older one, through sickness or because there was a big age gap, or if they had been single parents, the more severe the guilt. In my case I almost felt like I was betraying him, as badly as if I were having an affair (!). And it never occurred to me, much, that actually it was a really normal and valuable learning experience for him.

The other thing I finally worked out was that what I went through with Joe was a birth experience, simple as that. It wasn't the one I planned or hoped for, but it was his birth and it is no more or less valid than any other birth. Just different. Yes, it was lovely having Jim's dad "catch" the baby and be able to hold him next to my skin, to have Mozart in the background with everyone smiling and calm. But I hadn't planned that c-section anymore than I had planned the terrifying time I had with Joe. It took some time to realise that the things I most resented about Joe's birth - the fact that I didn't get to see him or even know what sex he was, that I was given the wrong drugs for breastfeeding - were because the doctors were trying to save my life and didn't have time for anything else. Now when it is his birthday, although the pictures are still as vivid in my mind as they ever were (the corridor ceiling flashing past as they raced me to theatre - I can see it now!), I don't get stressed out anymore.

Whatever you decide, don't feel guilty about the guilt (!). Recognise it for what it is - you don't have to welcome it, of course, but don't beat yourself up, either.

x
Laurie
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Penny
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PostSubject: Re: My Dilemma   Mon 30 Jun 2008, 7:52 pm

Hi Jane,
I can really empathise with where you are coming from.
Having had PE and a prem then luckily getting to term next time without PE I do understand what you mean.
Of course i wanted my son to be healthy and not have to go through what Maddie went through and obviously thrilled the PE didnt strike again BUT whilst pregnant there was a small part of me that didnt want it to be different from before as if it was i would find out exatly what i lost and missed out on, which of course i did.
It was very hard following Mackenzies birth as i could really see and feel what i had missed out on with Maddie.
It has and always will have an effect on me as a person and a mummy but for me the risk was worth it. I have 2 very different children and i am learning to accept that they are who they are whatever start in life they had.
Hope some of this makes sense. If i can be of help or support in any way at all please just ask.

All the very best.
Penny xx
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Annika
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PostSubject: Re: My Dilemma   Mon 30 Jun 2008, 8:14 pm

Hi there. I am not sure I can anything much to what Laurie has written and expressed so well. The fact is bringing any siblings into the world does and will always "upset" the natural order that you have with your eldest child, and inevitably you do compare the births and early months, and invariably feel some guilt that one may be getting more attention over the other and what impact is this having on their emotional stability/development etc. HELLP and a traumatic birth experience of course adds a lot more to this complicated set of emotions but the key thing to always remember is that you were in no way in control of what happened to your pregnancy- and yes it's awful when one child was born so traumatically and a subsequent one born in a less traumatic way as you would always wish all births to be calm events, but life deals us these cards and so so many people have also been through the same and in all honesty I don't think how the child was born ends up have a huge effect on their happiness longterm. It's just part of who they are.

My son was born under very similar circumstances- HELLP diagnosed, very rapid and scary emergency c-section and a bumpy road through SCBU for 8 weeks (plus a couple of readmissions). He's now 3 and not even a highly trained paediatrician would guess he was premature. He's a sensitive child- but apparently so was I (born naturally, full-term etc etc.), but also incredibly imaginative, full of chuckles, energetic and inquisitive and an absolute joy. Partly because I couldn't imagine not having a sibling myself we decided in spite of the risks to have a second child. Our daughter Mairi was born 2yrs 2months after Sam, and the pregnancy unfortunately ended prematurely by pre-eclampsia again. BUT this time at 36 weeks and HELLP syndrome didn't strike so we all had a far easier ride of it, and by comparison to my first pregnancy it was a much greater success (though you could argue both were successful as I have 2 beautiful children). Seeing the two children interact makes me absolutely sure we did the right thing, they are insperable and have smiles for each other that melt my heart. I also know whatever life throws at us in the future we have more people to bear the blows, if that makes sense. I still feel great sadness and guilt at having made them both go through SCBU and knowing how much in particular my eldest had to endure. But I really don't believe that's affected them much.

Life deals us all sorts of difficult hands- Mairi was diagnosed (very unexpectedly) with cystic fibrosis at 7 weeks so that's raised all sorts of other issues, we have embarked on yet another journey we didn't plan on, but it's really not so bad. I honestly feel going through what we have has shown me the very best and the very wost in life, and for that I'm grateful. I am so much wiser than I was 3 years ago. I have *almost* stopped feeling guilty and reconciled myself with everything that's happened. Yes I am rubbish at being pregnant- but I think I make a pretty good mum. I am learning to be gentle on myself and try to find some peace with all that's happened. The two smiling (or not!!) faces of my children remind me every day of how lucky I am really.

Sorry for the long-winded ramblings but I hope you can see where I'm coming from and if it offers you a useful perspective that is all I could hope for.

To quote the desiderata:

But do not distress yourself with dark imagining.

Many fears are born of fatigue and loneliness.

Beyond a wholesome discipline, be gentle with yourself.

You are a child of the universe, no less than the trees and the stars;

you have a right to be here.

And whether or not it is clear to you, no doubt the universe is unfolding as it should.


I wish you the very best for you and your family's future- and send you lots of hugs too

Annika xx
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Nicki D
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PostSubject: Re: My Dilemma   Wed 02 Jul 2008, 8:25 pm

I'm 'Jane'...

Firstly, I wanted to thank you all for your replies, and for not making me feel like I'm a completely bad person. I'm really sorry that I didn't have the courage to post initially under my own name, but this is such a painful thing for me. There are tears running down my face as I write now.

I always thought that I'd be 'good' at being pregnant and be a great mother (having never really been much good at anything else). I had everything planned - I was going to have a model pregnancy, eating all the right foods, doing all the right things, have a water birth at the local midwife led centre, I was going to have candlelight and soft music. It never even occurred to me that I wouldn't give birth, I was looking forward to it so much.

I was completely rubbish at being pregnant. I felt ill the whole way through and didn't really enjoy it and I'm not sure that I've physically recovered from it either 2 years and 9 months later. All the guilt and grief around Jon's arrival has also made me doubt my capabilities as a mother. I sometimes feel like I've never really bonded properly with Jon. Don't get me wrong, I love him completely, but I'm not sure if what I feel is what other mothers feel towards their children, and I'm so scared of having another one.

There is a huge part of me that says I should feel grateful for having had such a happy outcome, I have a happy, healthy child; something I know many women have only been able to dream of so far. And I am grateful for what I have, but it's so hard coming to terms with how different it all was from what I'd always dreamed of.

Thank you all so much for your support.

Nicki x
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Penny
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PostSubject: Re: My Dilemma   Wed 02 Jul 2008, 8:46 pm

Hi Nicki,

Firstly please dont apologise for not posting under your own name.
Its one of the hardest things in the world to admit to yourself let alone the world so I certainly understand.


If i can help in any other way, even if its just an understanding ear then pm me and we can talk more.

Love Penny xx
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mouse
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PostSubject: Re: My Dilemma   Wed 02 Jul 2008, 8:59 pm

Hi Jane,
So sorry you've had & are having such a tough time. Of course you're not a bad person & you certainly weren't rubbish at being pregnant - although it's something you desperately want to be in control of, how you feel/are during pregnancy is completely out of your control which is what makes it so hard to deal with, because it seems as though it should be the most natural thing in the world.
Everything you are feeling is completely natural & exactly what I have been feeling throughout this pregnancy. Although you are feeling 'counselled out' it might be worth considering someone specialised in helping women who have been through this type of situation - I'm sure lovely Liz would be able to help, or hopefully just being on this forum & putting your thoughts down & listening to other people's stories may help. I wish I had contemplated things a bit more before I got pregnant as I'm finding it hard now for exactly the reasons you outlined - guilt for the new one if I get PET/HELLP again & guilt for Yasmin if I don't. You are doing absolutely the right thing by thinking about it all now, but it must be really hard bringing up the past again.
Annika, Penny & Laurie all wrote beautiful responses & have helped me as much as I'm sure they have you.
Please keep 'talking'
Lots of love
Mouse xxx
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Penny
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PostSubject: Re: My Dilemma   Wed 02 Jul 2008, 9:08 pm

Just tagging onto something Mouse said about considering your feelings now prior to conceiving another.
Although we planned Mack we didnt actually stop to think about it too much, to be honest if we had am not sure we would have gone through with it.
Not saying either way is right or wrong, you may even find you cope with it better as you are expecting to have these feelings and preparing yourself, as i hadnt stopped to consider it, it hit me like a hammer on the head. Or your fear may hold you back from having another.
Does that make sense?
Where's that manual that should tell us what to do hey?? Very Happy

We are all here for you xxxxxxxxxxxx
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Lesley
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PostSubject: Re: My Dilemma   Wed 02 Jul 2008, 9:26 pm

Hi Nicki,

In a lot of ways my dilema is very similar to yours. I was so ill before and after having Isaac that initially I said 'never again'. We went to see an apec specialist at the end of last year to see what sort of risks were involved in a second pregnancy and came away feeling happier about the medical side of things.

However.......my big worry now is how I would cope with the idea of a term baby after having a 27 weeker. My fear is sort of the opposite of yours. Isaac became such a special little boy and, to all intents and purposes, is a little miracle and I worry that a lovely big term baby wouldn't feel so special. This sounds absolutely dreadful and don't get me wrong, I would never want to go through 13 weeks in nicu again but that thought of everything being so different is a very scarey one in itself without even the threat of pe on top.

Here to talk if you want. I love you
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