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Birth when the baby has hypermobility syndrome

(13 Posts)
Rainbowsandpotsofgold Mon 04-Mar-13 00:09:47

Was dx hyper mobility last year after 15 years of pain and 2 babies.. 1st baby was forceps delivery with a shite epidural and totally normal 2nd birth.. Thankfully neither of dd's seem to be hyper mobile. Up until reading this thread I had only heard of one other person with hyper mobility and had started to think I had been fobbed off with a made up problem
To get me to leave the drs alone!

Sorry for bein no help but got so excited reading this I had to post!!!!

Catchingmockingbirds Tue 19-Feb-13 11:05:06

Sorry OP, I seem to have killed your thread blush

Catchingmockingbirds Mon 18-Feb-13 12:14:45

I was dx as having hypermobility by a physio, my son also has quite hypermobile joints. I had a normal delivery with ds (that was before knowing about hypermobilty) with no intervention, apart from an epidural that didnt work. I'm 6 months pregnant now, I hadn't thought about any risk to baby during labour, should I say anything to my midwife?

I didn't get any report from the physio at the time, she just checked all my joints and done the test where you touch the floor etc and then said yes you're hypermobile, DS did get a report back saying he was hypermobile in his arms, hands, fingers, wrists etc but not too bad in his legs but he was there for ASD and gross/fine motor function delays, not for hypermobility. I actually thought everyone was that bendy as both me and DS always have been like that, and I couldn't understand the problem until she explained it to me blush.

Ellypoo Mon 18-Feb-13 12:00:22

Oops - ellie, not elly - so confusing!!!

Ellypoo Mon 18-Feb-13 11:58:54

Thanks reindeer!

We saw a genetic counsellor who was particularly aware of EDS from Sheffield Children's Hospital - DH is still under them, because there are very few specialists in the UK at the moment. He then wrote to my obs consultant and also a paed consultant at my local hospital, so that they could read up on it in preparation, and about what it might mean during the pregnancy. We were also told of the 50/50 chance of inheriting in each pregnancy.

The CVS could tell if the baby had EDS or not, but not the extent to which it might 'suffer' (IYKWIM).

ReindeerBollocks Sat 16-Feb-13 20:50:30

Congrats on the impending baby ellie we were on the EDS threads previously.

No advice but wanted to wish you luck.

rightmerca Sat 16-Feb-13 20:45:15

Hypermobility Syndrome, Benign Hypermobility Syndrome is same as Hypermobility Ehlers Danlos Syndrome and has been consensus of experts in field since 2010. So treat the mom as high risk for Ehlers Danlos syndrome. There is no genetic testing for this form at time. It is autosomnal dominant means 50/50 of inheriting from one parent. Hope this helps. I have Hypermobilty Ehlers Danlos syndrome and so does all my children and i am thinking my grandaughter still less than year of age may also have but can not neccessarily be diagnosed till she is older.

elliejjtiny Sun 10-Feb-13 14:09:30

Thanks everyone.

craving I'll ask my GP and midwife for a referral to anyone with experience of hypermobility and pregnancy/birth. I'll have a look at the link too.

Ellypoo DS2's paed is thinking that he/we have EDS but as he hasn't dislocated anything (although DH and I have both subluxed various joints) then his diagnosis is still hypermobility, hypotonia and gross motor development delay for now. We all had genetic tests done in 2011 and DS2 and DS3's came back normal so they didn't bother testing mine or DH's blood. The geneticist said that in type 3 EDS the CGH microarray test wouldn't show up anything anyway so no point in doing CVS. Was the specialist you saw an obsetric consultant or someone else? I think I need to push to be referred to someone who would know about eds/hypermobility and birth as the registrar didn't have a clue which didn't exactly fill me with confidence.

Ellypoo Wed 06-Feb-13 16:09:21

Hi, my DH has EDS which hypermobility is on of the symptoms he has - with DD1 we had a CVS test and the baby tested positive for it, so we spoke to genetic counsellors and specialists about the birth. Basically the advice that we got was that a VB could cause a shoulder dislocation which could cause permanent damage; and/or increased risk of the baby suffering a haemorrhage. As a result we were advised to have a ELCS for medical reasons; which we will be following for DC2 (didn't have the cvs but are assuming this baby will have same condition).

For me, it wasn't worth the risk of a VB, even avoiding ventouse or forceps - some of the risks are due to the full condition rather than just the hypermobility side, but can you discuss with a consultant/specialist?

cravingcake Wed 06-Feb-13 15:36:07

Ahh, I see, you have a strong genetic chance of this. I don't have experience of it but I was diagnosed as hypermobile (9/9 score) by physio who I saw 8 months after I'd given birth. She was really helpful so maybe ask your normal GP about it, or any physio people or even maybe (and this is a bit of a long shot) a yoga or pilates teacher as this is recommended exercises for hypermobile people.

this link is probably something you have seen before but just in case you haven't maybe try contacting them to see if they can offer more information.

I only know that you should avoid assisted delivery as you are more likely to tear and have damage caused to you and take longer to heal (which I know now), not sure about effects on baby tho.

elliejjtiny Wed 06-Feb-13 13:45:13

Yes I have hypermobility and so does DH and all 3 of our children. DS2 has it the most severely and he uses a wheelchair. This one isn't moving much which was DS2's first symptom so I am being closely monitored and they think this one has it too. DS2 was under the paeds from birth but they had to test for other stuff before diagnosis when he was 2. DS3 has it a lot milder but we all knew it was likely so he was under the paeds from birth and diagnosed at 3 months. The hypermobility wasn't that obvious when they were tiny but DS2 and DS3 were floppy and had feeding issues.

cravingcake Wed 06-Feb-13 13:01:30

Not sure how you would know an unborn baby has hypermobility syndrome, all babies are naturally very flexible. Do you mean you as mum has hypermobility? If so then definitely avoid forceps/ventouse. Also, if you are hypermobile then there is a chance an epidural will not be as effective.

elliejjtiny Wed 06-Feb-13 11:43:03

Has anyone done this? I've done it once, midwife and registrar have no experience of it and I'll probably be doing it again in July. There is hardly any info on the internet, I've only found that my waters will probably go before contractions start and I should avoid forceps/ventouse (I'm assuming that's to avoid dislocating the baby's neck but I'm not sure). Does anyone know anything about this?

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