Advice required pregnant HMS daughter

Find support and advice when dealing with the practical aspects of parenting when you have HMS - from pregnancy to teenage issues.

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Advice required pregnant HMS daughter

Postby l00pyp0u » Sun Aug 23, 2009 7:41 pm

If anyone could give me some advice at the end I would appreciate it.
I am 41, and snipped now, thank god, but I have 3 children, and was diag HMS in 2005, waiting for prof B at the moment, so I know where exactly I fall on the scale.
1st pregnancy, early thrush, pink tinged, more or less at conception, there's a reason for putting that bit in, no problems, but was lucky enough to get a special pair of knickers from Mothercare, with a big elasticated, adjustable band attached. MY LIFE SAVER. as the back pain was incredible. then 33wks sat down for a wee, got up sat down again. did not consider that it could be my waters, doh!!! Finally at 36wks they discovered that my bump had shrunk, er yeah!!, and taken in, and induced as baby was too squashed. Now I don't seem to produce the labour hormone at all, but no midwife ever believed me, so the burst the waters, already 7cms dilated, but no labour followed.
Eventually they stuck the drip in, after 8hrs of just sitting there, and labour started. Had an epidural, only worked on the left side of me, so they topped it up, no difference, so they rolled me on the left side and tilted the bed, so my feet were higher than my head. Yeay pain free!!. start to finish , that is pains to delivery 2 3/4hrs. 6lb 6oz girl, 4 wks early.
2nd pregnancy, early thrush again, pink tinged. went reasonably well, apart from back pain, but ended up in hosp for a month, as I had a trapped artery in my neck, and was 24hrs from induction of baby at 31wks, and fingers removed on left hand. pumped full of drugs and bed rest. induced again through blood pressure this time, sky high and no wonder, 3 wks early. again burst waters no reaction, drip in and off like the proverbial galloping horse. Then some thing went POP in the front of my pelvis. Told midwife, and ignored, it was probably just my hind waters going, then I was at the push stage. 1 3/4hrs pain to delivery. 7lb 6oz with a very small head, wonder why?
3rd pregnancy. early thrush and haemoragic cystitis, thrush was ping tinged. Problems with slipped disk, and back pain, in and out of hospital for blood pressure, and at 32wks 5 days waters leaked, now at least I knew this time, so back off to hosp forthe Jab. IN OUT IN OUT IN OUT, me and consultant had both had enough, so was induced again. again no one listened, burst waters, no pain, drip inserted, and 1 1/4hrs from start to finish, they didn't even have the bed set up, and I was holding back due to back pain, and don't mention the anethetist to me, he came back just after baby was crowned!!! 7lb baby midwives convinced much earlier than 37 wks, with very small head.
I did not once show, I always dilated very early, had very quick labours, sorry to the others, and had 2 babies with a head circ of 31cm, and ridges, they looked like devil children.
But I had no problems with bleeding.
First child is now 18 and 27wks pregnant, she also is diag HMS but no definate diag, eg genetic
She has Jaw, back, feet and ?raynaulds? or at least circulation problems. and we're not due to see my old obs consultant til 36 wks. She insited on seeing the same one as me, last baby now 7yrs, so he's still there.
Advice appreciated please, as personally I would kick up a stink, and get in there early, but she's not confident enough to push for it.

Lou
Professional Hypochondriac and Attention Seeking mother! Familial JHS/EDS3, F/M, 22/3/2010
Skake(Thats the Tremor) Rattle(That's the tablets) and Roll(in and out of anything) all the way.Hypermobile 2005
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Re: Advice required pregnant HMS daughter

Postby jax » Sun Aug 23, 2009 8:10 pm

Hi Lou,

Could she speak to gp about more regular checks with midwife?

It's worth having a point of contact should anything come up.
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Re: Advice required pregnant HMS daughter

Postby l00pyp0u » Sun Aug 23, 2009 8:16 pm

problem is she doesn't particularly like the midwife, and keeps asking to change, but getting no where. She's been to physio, and tried the belts, but they just hurt her more, and isn't getting relief from physio excersices.
She's also trying to move house, but is still waiting for cooker and fridge before she completes the move, so she surrounded by idiots running her off her feet. No BP probs for her just yet, though
Lou
Professional Hypochondriac and Attention Seeking mother! Familial JHS/EDS3, F/M, 22/3/2010
Skake(Thats the Tremor) Rattle(That's the tablets) and Roll(in and out of anything) all the way.Hypermobile 2005
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Re: Advice required pregnant HMS daughter

Postby jax » Sun Aug 23, 2009 8:33 pm

I just think it's important to keep contact with the medical side
so they know the history and someone she can call on if she's
having problems. Perhaps put the problem to the gp and or
midwife of the potential dangers involved. I'm sorry about the midwife - I can sympathize
there - I'm not sure if there's some material related to pregnancy on HMSA site/leaflets
you could take to "educate" them.

Unfortunately I ended up being told to get on a train to come to the
hospital whilst I was going into labour with a 28 weeker and no one
really believed me till um he came .....28 weeks and one day.
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Re: Advice required pregnant HMS daughter

Postby l00pyp0u » Mon Aug 24, 2009 6:46 am

Jax, so sorry hun, that must have been awful for you :hug:
Thing is, I dont have Marflans face, but she seriously does, absolutely no chin, and it's a bit recessed. I think my chin is quite "witchy" in appearance.
does anyone know, how their mothers labour went , and was it anything like thier own. What I mean is, yes we know she's HMS, but is she likely to have roughly the same experience as me, she's already complaining of baby moving around and "squishing "her bladder with his handsand feet. like playing with a squishy cushion :S
I cant ask my mum, as she died, but if anyone else has any exp I would appreciate it. She has also had early thrush, pink tinged.

lou
Professional Hypochondriac and Attention Seeking mother! Familial JHS/EDS3, F/M, 22/3/2010
Skake(Thats the Tremor) Rattle(That's the tablets) and Roll(in and out of anything) all the way.Hypermobile 2005
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Re: Advice required pregnant HMS daughter

Postby jax » Mon Aug 24, 2009 7:54 am

sorry marflans face? Lou please clarify? possibly in a pm :)

My pregnancy was nothing like my mother's at all! She had easy labours with relatively
no problems (or so I am told).
Also I have no diagnosis of HMS but my son does. I'd say to anyone
with HMS and pregnancy - have regular checks just to be safe and
in case you need the support.

You daughter may well go onto complete a perfectly healthy pregnancy.
Please try not to worry.

Jax
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Re: Advice required pregnant HMS daughter

Postby l00pyp0u » Mon Aug 24, 2009 9:01 am

Jax do you ever sleep?
its Marfan facial features, excuse my spelling but having problems with speach and written word at moment :oops:

Lou
Professional Hypochondriac and Attention Seeking mother! Familial JHS/EDS3, F/M, 22/3/2010
Skake(Thats the Tremor) Rattle(That's the tablets) and Roll(in and out of anything) all the way.Hypermobile 2005
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Re: Advice required pregnant HMS daughter

Postby jax » Mon Aug 24, 2009 11:49 am

no probs - You'd need to see a geneticist to diagnose the Marfans if you think it's a possibility.

re the sleeping - no not at the moment. :)

I must go as I'm going off topic a bit here.

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Re: Advice required pregnant HMS daughter

Postby cuddles » Wed Aug 26, 2009 11:15 pm

Lou
i have marfans ,and maybe able to give you some contact details etc on getting info etc

There is an email address of a very good geneticist which i can send you
She usually responds in 10 working days to emails , depending on work load

xxxxxxxxx
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Re: Advice required pregnant HMS daughter

Postby barkingmad » Thu Aug 27, 2009 1:52 am

I think you cant really judge how your mums labours were and how yours would be, because there are so many vairiables that you cant control, ie your daughter would be a mixture of yours and hubby genes, so likely to have some aspects of hubby, her pelvis mayne larger, smaller, stable or unstable. and then there is the baby itself, which is obviously half dad, so that is another variability.

My births were different to my mums apart from we both had a posterior delivery, mine the first and mums the last. It is very hard to determine how it will go for your daughter.

But i am sure she will be taken care of, if she has HMS then it would help to tell them, I know that Nickb had a very good monitored pregnancy and hopefully so will your daughter.

I am dreading the time when my daughter gets pregnant, not sure I will be the best person to offer support! :wink2:
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Re: Advice required pregnant HMS daughter

Postby tireesix » Tue Sep 15, 2009 10:57 am

My mums labours weren't the same as mine and she is EDS/HMS but then, I found the less interference I had from the medical types the easier and better labour was (totally freaked out 2 rheumatologists and my Ob with a homebirth, imagine what the would do if they found out I freebirthed too? The would probably faint.

To be honest, if it were my daughter, I would push about getting some relief with regards to pain, I would definitely push for a different MW but I would tell her to totally avoid an Obstetrician unless she had any specific worries or there had been any other specific worries other than HMS.

Not much help I guess.
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