to ask for your help to decide whether I should have a child or not? (EDS related)

(176 Posts)
EverythingsBeachy Fri 01-Mar-13 21:25:41

Ok here goes. Posting to ask for everyone's advice as to what I should do, whether I should have a baby or not. Obviously nc'd from regular as I will probably be completely identifiable, so if you do know me lovely friends who I know are on MN, don't out me by name!

Will try and include everything relevant, don't want to drip feed.
I have a disability called Ehlers-Danlos syndrome (EDS), the disability name itself doesn't matter if you've never heard of it. This causes by joints to dislocate, causes a lot of pain, fatigue and all sorts of affects on my heart, bowel, brain wiring etc. the tiredness is overwhelming and I need help with everyday stuff like cooking, washing, dressing etc.
Have been with DH for 10years, always assumed would have children, but disability now means I use a wheelchair anywhere out the house, including work.
I work part-time and am just about managing to stay working in my job. In 2 1/2 years my job should be in a place that if my disability worsens, I should be able to remain at work, but getting there will be difficult. Work are doing all they can to get me there, but I know there might come a stage when it is not safe to do my job.
We know we can physically get pregnant, as got pregnant last year but had a miscarriage. On seeing the consultant, he suggested an appointment to discuss further pregnancies as it might not be a good idea for me. Her that appointment soon.

There are 3 issues for me, being pregnant, looking after a baby and the genetics.

1- risks for pregnancy include preterm labour and premature baby, increased dislocations, very poor skin tissue healing from tearing or suturing, there is a possibility that I could be off work from as early as 12 weeks in worst case scenario. Also that I could damage by joints to the stage that I would not be able to work afterwards. Let alone look after a baby. I also have a new leaking heart valve . Rheumatologist thought pregnancy wasn't the brightest idea, another more senior one said yes, with extra care. But he's a specialist in London so was a one off visit. If I can no longer work we will be screwed financially, and unable to afford a baby

2- most of my friends have babies and let me practice with them. I know I can't bath a baby in the bath, baby bath or otherwise, I can't bend over a cot or a Moses basket, I can't bottle feed a baby unless I am not holding them at all, I cannot change them on my lap, the floor or a sofa. But can on a baby changer. I cannot life a baby car seat in and out the car, even when empty. But we've looked into adapting main stream equipment, like stokke pram, bunk cot, tummy tub and bimbo, slings etc. my DH is great and tells me not to want to bf so he can do the nights etc, but he will be at work during the day. Both sets of parents live a 2 hour drive away.

3 - there is a 50% chance of passing this condition on, and not know the severity. There is no prenatal screening so will not know if baby is affected until baby born. We have spent years agonising over this and if I had had better input when younger might not be in the state I am in. So we have kind of accepted this

So our options are not having children, having one baby, adopting or surrogacy. I am so maternal I really want a baby, but also feel really selfish that I don't want to be completely broken and still want to work and contribute in the future. I think I have ruled out adoption, there are so little children out there to adopt and so strict, I think I would not qualify with the care I could give. Looked into surrogacy and would do host surrogacy, even though it would mean using my eggs and passing it on. One friend always used to offer to be our surrogate, but now it looks like we are at that stage, she does not want to do it, which I am completely fine and happy with that. My DH doesn't know how he feels about surrogacy anyway. The cost has ruled it out anyway, being around £25,000 we do not have that money, could not get a loan and are not far enough into our mortgage to realise that kind of money.

So it leaves us with me having a baby if we want one, as there are no options left. So should I go for it again, I think last time we though I wouldn't get pregnant so kind of forgot about a lot of the issues, or never have a baby. I do have lovely friends who know children might not be possible and keep us very involved in our god daughter life. I love her to bits. If I wait 3 years I am more likely to be able to keep my job and continue working. But I think physically if I don't go through pregnancy now, I will be a lot worse in 3 years time, going on my current rate of deterioration.

Thanks for reading this far if stayed with be, sorry if you think IABU to ask this, but we have spent years thinking and I have no idea what to do, I am so torn and spend evening crying about this decision. From feeling selfish to be worrying about the physical effects on me, to dreaming of being pregnant, holding a baby an bfing it.

chris481 Sat 02-Mar-13 06:53:20

A few people have made the link that conceiving (or not) a disabled child is equivalent to deciding whether the life of an actual living disabled person is worthwhile. This is wrong, a person who is in the world is not equivalent to a sperm and egg before fertilisation, or even immediately after, for that matter. A decision appropriate for one is not necessarily appropriate for the other.

HollyBerryBush Sat 02-Mar-13 07:04:27

Finances too. You talk about your husband dropping hours etc. Don't think the same level of state help with regard to tax credits etc will always be there. And dare I even think it, the most stable and loving of marriages can crack under pressure - the scenario of a wife and a child with a disability, plus financial hardship doesn't look good to me.

Fatherfluffybottom Sat 02-Mar-13 07:31:29

I have a lot of sympathy for you but just wanted to say I think you are possibly underestimating how relentless and demanding parenting is (most people do before they have children, I know I did).

I have no disabilities but have found having children the hardest thing I've ever done. I love them absolutely but the demands never end and I have a healthy 12 and 4 year old. Second what was said above, you may not get a compliant child who will stay with you when out etc. Both mine were/are physically very difficult to handle.

Also I really did expect my parents would be very hands-on and a big support. That didn't materialise at all. Everyone was working or just not interested. (They help my sister with her dc endlessly though, but that's another thread). I ended up with very bad PND which is still very much affecting me.

I understand how you feel and the longing but in your case I would concentrate very much on my own health and be a fantastic auntie and godmother, loved and adored by the children in my life. Maybe the best of both worlds?

Hope I've not said too much or upset you. It wasn't my intention at all and I think you are very courageous. Wishing you all the best xx

Mama1980 Sat 02-Mar-13 08:05:36

Hi first I think you sound very brave and I totally understand wanting to canvas subjective opinions. My situation is very different but this is my experience I had a car crash 5 years ago when pg had my ds1 at 26 weeks, I was left with multiple health issues, last year I fell pg again accidentally and was advised to terminate due to risks to both our health. Ultimately I couldn't and my ds was born at 24 weeks, he is doing great but I am still in hospital confined to a wheelchair. It is unlikely I will ever walk normally again. I am a lone parent with 3 children depending on me. Thankfully I have a wonderful supportive family but do I regret my decision even knowing what I know and the answer is no. Being a parent for me is the easiest thing I have ever done, I manage fine 95% of the time and they are my reason for fighting.
But would i have planned to have a second birth child and the answer is honestly no, simply due to the impact it has had on my dd and ds1 lives short term at least we don't know what the future holds.
I wish you all the best x

DreamingofNutella Sat 02-Mar-13 08:32:22

I have the genes for a genetic condition too - Huntington's disease. Whilst it doesn't affect me now, it will in the future. I have a 50:50 chance of passing it on. We tried pgd ivf at guys twice to stop passing it on. It didn't work for us. Bad luck and my eggs just couldn't cope with the procedures. I didn't think I could adopt- it used to be that I would have been banned because of the HD. But we went to a meeting and whilst the lady couldn't guarantee anything (she wouldn't have guaranteed anyone from a 10 min chat), she was very hopeful and said it wasn't a no. We were really keen on going for adoption but decided to have one more go at the ivf first. We went to Barcelona, changed tactics and had ivf via egg donation. I got pregnant! Childbirth was not straightforward, i had a back to back delivery, a 4th degree tear and now have some minor, manageable bowel issues. Whilst i can cope now, i do not know if this will make things worse with the HD when it starts. Our DS is 18 months now. It took three years, a near breakdown for me and a lot of counselling but we got there and he is worth it.

I know it's not the same situation but I thought it might help. I would never want to impose my experiences on you, it is yours and your husbands decision, no one else's but maybe there are more options than you realise? Egg donation, pgd ivf, adoption could all be routes forward. But I would say that counselling was vital for me to get through. Maybe a counsellor could help you to explore your options and figure out what you want?

A long post! Sorry! Good luck in whatever you decide.

Ellypoo Sat 02-Mar-13 08:35:38

Haven't read all your replies yet but my DH has EDS and there is screening - we had a cvs test done with our 1st pg to test to see if the baby had eds.

Also, EDS has now been approved for PGD with ivf so it could be possible to have a surrogate with your egg, and the embryo could be tested before implantation.

moisturiser Sat 02-Mar-13 09:08:11

OP I'm in a similar boat, though as yet am not married so it's more of a theoretical issue for me.

I have agonised over this question for the last ten years; I adore children beyond anything and I would make a good mum. I have decided I'm not going to have children, and I've only really made up my mind since becoming an aunt and godmother. I look at those close to me who have children and think about what would happen if they rang and asked me to look after even one of them for the week. I just couldn't do it. With help all day from someone else I'd manage but unless I win the lottery that is too expensive. I would be so concerned about having a child with EDS, which might sound awful but I believe that life has huge worth and can be fantastic even with a horrible condition, but I know I couldn't cope day to day and I wouldn't want my child to see me suffering as I frequently do.

It is heartbreaking. I'm getting around my grief by spending lots of time with other peoples' children, volunteering and I hope to get a pet one day that I can love. It isn't ever going to be ok that I can't have them, but c'est la vie. Have a look at the organization 'Gateway women' which is for women who can't have children. They've helped me a lot.

mum382013 Sat 02-Mar-13 13:31:17

there is screening for all types of eds except type 3 unless they find your particlar gene combination. We know as we have had a genetics consult.

mum382013 Sat 02-Mar-13 13:35:26

Testing

The biochemical etiology of EDS, hypermobility type is unknown in most cases.

Molecular Genetic Testing

Genes. Heterozygous mutation in TNXB is associated with EDS, hypermobility type in a small subset of individuals. However, skin hyperextensibility, easy bruising and other hematologic manifestations are not part of this phenotype (see Genotype-Phenotype Correlations).

Evidence for locus heterogeneity . A mutation in TNBX is not identified in most individuals with a clinical diagnosis of EDS, hypermobility type. Thus, the etiology and genetic locus/loci are unknown in the vast majority of cases.

Research testing. Serum tenascin-X protein testing is available on a research basis only.

mum382013 Sat 02-Mar-13 13:40:06

sorry just read that back and that sound like im being bigheaded and aggressive. blush sorry

mum382013 Sat 02-Mar-13 13:43:09

I will say the pressure it puts on a family and reltionship makes it very hard. My marriage after 15 years is breaking up. he cant take the pressure and is behaving badly. not easy. sad

mum382013 Sat 02-Mar-13 13:45:30

Can you tell ive had a bad night? sad

Hello.

I have EDS (hypermobility type but am about to push for a change of diagnosis to classical).

I didn't get a diagnosis until after I had DS. I wont lie, I had to leave my job about 8-12 weeks in as I couldn't walk without walking sticks and being in agony, my hips dislocated and subluxed umpteen times every day and the joints that I usually had dislocations with got so much worse.

I landed in hospital many times with heart and blood pressure problems.

I had lots of threads on here, the whole time was agonising and I have never recovered.

I was induced at 38 weeks due to the pain and SPD and other problems, they gave me an epidural which I wasn't keen on as anasthetic normally doesn't work on me and wasn't allowed to move even though the epidural failed as I thought it would, the MWs didn't understand my condition (it was queried at this point and definite dx of hypermobility) and kept using a wedge thing to put me on my side, the pain from my hips subluxing the entire way through labour was the most agonising thing I have ever felt, I would have killed myself if I could and begged DP to knock me out.

I went from 5cm to fully dilated and fully effaced in about 30 minutes (very common in EDS) but no one would believe I needed to push, eventually when they realised I was and was pushing the MW kept pushing my legs right up and making me put my neck on my chest, the pain was horrific and I begged for forceps.

Had episiotomy and forceps and DS was born fine but then needed stitches... they all tore out, I was in agony for weeks and weeks and still have ragged skin.

I have a suspected cystocele and rectocele and have been told that even if I didn't at this point I will need surgery for it at some point as it is so common with the EDS.

I have greatly struggled with the fatigue and breast feeding was painful because of the way I had to sit.

I have problems getting about with the pram, picking DS up, sitting feeding him for periods of time etc.

I do do it though, it fucking hurts and it isn't easy. DS seems fine so far but the Drs have noted that he has clicky joints.

Money is a struggle because I can no longer work and rely on benefits and I have needed constant physio since he was born.

I am now pregnant again (contraception fail) and really scared, I am now on anti depressants as I was starting to feel suicidal at being pregnant again, I am so worried for the future.

Sorry that's a bit of an essay...

EverythingsBeachy Sat 02-Mar-13 14:33:29

schro thank you so much for sharing what your life is like, I must admit that when I was pregnant before, my DH was really worried about me, and a bit relieved when I had the miscarriage. That it would give us more time to really think about this. The whole no legs in stirrups thing, and every time I watch obey, I keep saying to my DH, I can't put my chin on my chest to push! Will they consider a cs for you this time, was thinking that might be better, although knowing how my sutures have fallen out from other surgeries makes me think that isn't a good choice either.

mum see, you had a bad night, I woke up with my joints several times, but not with children, I cannot imagine coping on less sleep and take my hat off to you.

ellypoo can I ask what type of eds your DH has and you had CVS for?

You're welcome. smile

They put my legs in stirrups even though it was in my notes not to... I begged them to stop but she wouldn't listen and said "well they're in now so you're fine, it's only SPD". I think I had a rotten MW though.

I would be allowed a CS if I liked but am having a home water birth as this is agreed that it is best for me. I can guarantee the pool to take the weight off my joints and there is no temptations of epidurals etc and if I have a speedy labour then there is no risk of me trying to get to hospital.

I will have a very detailed birth plan and it is already in my notes that I can't hold stitches and am to have another anasthetic review, I am guessing this is in regards to if I need a CS, if that's the case I will most likely be given a general anasthetic as it's too risky otherwise.

I don't think you should entirely rule out the option of having children, you are doing the right thing learning as much as possible beforehand.

Also with children inheriting it, if you know young then you can take steps to minimise the impact. Lots of core exercises to try and gain joint stability etc.

MrsDeVere Sat 02-Mar-13 14:50:48

You may want to contact www.dppi.org.uk and the Disabled Parents Network for more information.

MrsDeVere's idea is a brilliant one. You can get help from certain organisations and some social work departments for adaptations in the house and support groups for disabled parents.

I was offered it and wish I had taken it.

maddening Sat 02-Mar-13 19:35:12

Schro - does tens work for you? I know o don't have eds but the tens machine designed for labour was effective when not in the pool.

Phineyj Sat 02-Mar-13 20:50:53

You mentioned that you don't know anyone without children (which seems incredible...really...no-one at all?)

It might be an idea to go out of your way to meet people without children so you can get an insight into what life might be like without them, what possibilities there are etc. There would be positives as well as negatives.

propertyNIGHTmareBEFOREXMAS Sat 02-Mar-13 21:11:28

You are in a very tough position. In your shoes I would not have children. I really could not knowingly take that 50% chance of passing an identified genetic condition to my child. I would concentrate on living the happiest and fullest life that I could and would enjoy spending mine and dh's money and time on each other. All the very best whatever you decide.

EverythingsBeachy Sat 02-Mar-13 21:51:17

phiney I do have friends who have not yet started their family as I'm not that old, but all of them are plannig on having children in the near future. I meant friends who either have children, or are planning on children. I know some might not In the future, but all friends either already have children or want them. Mums generation, or family friends, everyone has children. I know of no people who did not have children by choice or circumstance. Incredible I know.

Pease tell me where I should go to actively seek people with on children, are there places where they / we are banished and I can go and say, hello, please be my friend?

Thanks for the previous suggestion of gateway woman, had a read this afternoon

Thanks mrsdevere had a look previously at the boards looking for equipment, but did not contact them regarding help available.

jjuice Sat 02-Mar-13 21:51:58

I don't have EDS only HMS and found pregnancy and childbirth quite a trauma. The epidurals didn't work and the final stage for my dd lasted about 5 hours. I also had excruciating Obstetric cholestasis with both although I don't know if it's connected.
Both my DD and DS have hms although to a lesser extent and not diagnosed as they only give diagnosis if you have suffered pain for x amount of time in x amount of joints. I wasn't diagnosed until I was nearly 40, up until then I was just the bendy woman.
My DD plays high level sport and it breaks my heart when she gets an injury solely because of her lax joints and I can't even begin to tell you scared I was when she had to have teeth out because her overbite was huge, luckily my dentist was patient and made sure that she was completely numb unlike my previous bastard dentist who insisted I couldn't feel him yanking bits of broken tooth out of my gums

What I am trying to say is that it's hard when it is yourself going through pain but when it's your children it is a thousand times harder to bare.

www.hypermobility.org/forum/index.

The forum is amazing and the members so helpful.

I wish you luck whatever decision you make.

EverythingsBeachy Sat 02-Mar-13 21:59:01

Thanks jjuice were you diagnosed before your had your children? Bet you felt you'd missed out of the fabled lightening fast labours!

Already on the forum. There was a thread in there about deciding whether to have children, but no-one looks like they've replied in about a year!

mrsdevere rebooked at the ddpi website, it looks like its been revamped, will have a read of all the publications and see which ones would be worth buying

EverythingsBeachy Sat 02-Mar-13 21:59:31

Sorry, I'm guessing you were diagnosed after having children?

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