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

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

Message withdrawn at poster's request.

FarBetterNow Fri 01-Mar-13 21:37:34

I greatly admire you.
I cannot begin to imagine the difficulties you face in your everyday life.
I am wondering how you would physically manage to look after a baby if your husband is at work, if you are unable to lift a baby out of a crib, etc.

Life has not been kind to you, though you do have a wonderful DH, but maybe we cannot or should not have everything that we wish for.
Would it put a strain on your DH and your relationship if you did choose to have a baby?
Maybe, I shouldn't say that but you have asked!

OhDearieDearieMe Fri 01-Mar-13 21:40:15

Well. I feel for you - truly I do - but I just wouldn't. I can kind of understand the yearning you feel but I think you have a duty to yourself and your theoretical unborn child to overcome that yearning. I guess that won't be a popular view on MN but you did ask.

HollyBerryBush Fri 01-Mar-13 21:41:48

This is quite emotive isnt it? not the sort of thing that canvasing opinions on a chat board should be used to make a life changing decision.

Me? I would make an elective decision to not pass on a genetic illness. But thats me, I'm pragmatic

I see children every day who have to car for their parent. It isn't fair.

I can give you an anecdotal story, the short version, acquaintance, hereditary heart contition, 6 children, each one has undergone heart surgery. Ok I can accept one or two children before the hereditary factor was established - but 6 children? As a mother, you have to know when its not appropriate to cause further pain and suffering and concentrate on those children you have.

I'm sorry if that isnt the answer you were hoping for.

NayFindus Fri 01-Mar-13 21:42:35

Well, on the one hand I'm reasonably fit and healthy, but was 35 when I had dd. And I'm knackered. The sleepless nights (they don't tell you it's for months at a time, oh no...) the vomit and diarrhoea, the screaming of frustration at not being able to communicate. It takes a while to adjust and realise that however bad you're feeling, you still have to mop up the body fluids and not lose patience. That's the down side.

The up side is, they're not a baby forever. They learn to speak, control their bowels, and get a whole lot more fun to be with. But you've got to get through the first year or two without killing anybody. And that's if you actually bring the baby to term without too much damage to yourself.

Many, many people have children they neither want nor care about, and no amount of able bodiedness will unfuck them.

If you want them, have them. But think practically about how you'll be able to cope when you, they or both of you are ill, and do not underestimate the difficulty of looking after an entirely dependant being when you're exhausted. Love isn't enough. You will need friends willing to help out a lot. And you should go talk to the senior rheumatologist in London again. You need to know what special care you need and where you can get it from. You cannot go into this uninformed (which I'm sure you know, which is why you're posting).

Good luck x

N0tinmylife Fri 01-Mar-13 21:51:37

I think unfortunately this is an unanswerable question. As far as possibly passing on the condition, do you wish you had not been born? If so you should not have a baby, if not then that alone is not a reason not to do it.

As for the affect on your health, no one knows how much or little that would be. It sounds like having a baby is far riskier for you than for most people, but there is always a risk involved, and things can go wrong. I think if you can envisage the worst case scenario, and come up with a way of dealing with that, then there is no reason not to do it. My gut feeling is to go for it, but then I love being a Mum, and think everyone should do it, so I am horribly biased! What does your DH think?

FarBetterNow Fri 01-Mar-13 22:00:45

I think it would be very sad if the child became your carer and that would probably be inevitable.
Life is hard for a lot of people and very hard for some like you.
Women who don't want to, fall pregnant even though they are may using contraception. Other women are desperate for a baby, but no luck.

You have a fantastic, loving, caring husband, but maybe bringing a baby, who possibly has a genetic illness, into the world that you are unable to look after is not wise.
Sorry.

Smartiepants79 Fri 01-Mar-13 22:10:26

Difficult for others to really know what to advise.
Personally I would hope if I was in a similar situation I would have the strength to NOT have children.
I agree with others above that bringing a child into the world knowing that they may have to suffer as you have or will have to watch their mother slowly deteriorate before their eyes is a difficult choice. Also all the risks associated with the pregnancy and possible prematurity.
Obviously this can happen to any child but to do it KNOWINGLY is a very big difference.
This may very well be a very simplistic view and a bit preachy but I do believe quite strongly in not just doing things simply because you 'want' to. This descision has massive consequences for lots of people, not least the child in question.
Having said all that I cannot imagine being without my daughters and being childless would have left an enormous hole in my life.
You will have to think and plan extremely carefully for how you will cope without your husband at home. Could you pay for help?
Good luck with whatever you choose.

saggyhairyarse Fri 01-Mar-13 22:13:06

Is there a support group for people with your condition that you could contact and who could tell you their experiences and also suggest coping strategies for the various issues you might encounter? Could you employ a carer or a nanny to help at all if you needed to or would you be entitled to funding for this? I always think, where there is a problem, there is a solution but I am ever the optimist! I have a friend with a disability that resulted in her having a preterm baby who has cerebal palsy as result of her prematurity. I realise this is not the same as you but, whilst my friends life is not an easy one, she does get help from carers, her daughter is amazing and they have a wonderful relationship and both lead very full and happy lives smile Just wanted to offer some positivity...

HildaOgden Fri 01-Mar-13 22:17:18

On a purely 'head' based,intellectual level,I'd say no...don't have a child.

On a purely 'heart' based,feeling level,I'd say I feel deeply for your plight.But I'd also feel deeply for a child who was born either with the condition,or being born living with the certain restrictions caring for someone with such a condition would bring.

I feel like a bitch for saying that.I'm sorry sad

Trills Fri 01-Mar-13 22:20:15

Yes, you are being unreasonable to ask for our help to decide because no matter how much you type you will not be able to really explain the situation to us in sufficient details.

We can't make this decision for you.

Is there anyone in real life that you can talk to? They can't make the decision either but they might be more useful than a bunch of randoms who have only known you for a few paragraphs and whose personal issues or beliefs you don't know anything about.

formallyknownasloveydarling Fri 01-Mar-13 22:21:53

Gosh, would what strangers write on an Internet forum really influence your choices?
I am sorry but I think the most unselfish thing you could do is not bring a child into the world for all the reasons mentioned by other posters.
But I think there are better places to discuss this in rl.

elliejjtiny Fri 01-Mar-13 22:27:58

I have EDS (mild) and so does DH. We have 3 children who all have EDS and another on the way. My DS2 (aged nearly 5) seems very similar to you, symptom wise. I am very thankful he is a boy and won't have to make the decision that you are.

With your risk of passing on EDS any children you have will be closely monitored and given help straight away if needed. From a practical point of view could you pay a carer to help you with the baby?

maddening Fri 01-Mar-13 22:36:09

with eds aren't there different levels? I vaguely remember some can mean a greatly reduced life expectancy? Would having a baby impact that for you?

I think the risks for yourself might outweigh the benefit of having a baby. Then when you add in the risks for the child it possibly weighs on the side of the sensible thing to do would be not to.

As for the physical care - your dh would need to essentially be the main carer for your dc as well as for yourself - is he happy to do that? - and if your life expectancy is lower he has to consider the possibility of the worst happening.

but by god I can understand you wanting to do this and am so sorry this is so tough for you. I would investigate what support there is out there for you and your dc and see if you can build a strong plan of care and address the potential work issues and then decide if that is enough. Also see if there are ways you can prepare your body for this.

whatever you decide I wish you well

LivingProof Fri 01-Mar-13 22:41:10

Re point 3, could you have Preimplantation Genetic Diagnosis? Ehlers-Danlos syndrome type IV is on the list of conditions that Guy's can test for.

Phineyj Fri 01-Mar-13 22:47:28

This is very sad and unfair but I think you already know the answer to this question. The risk to you sounds too great, and that's before considering the situation of your DH/child.

hhhhhhh Fri 01-Mar-13 22:47:51

Message withdrawn at poster's request.

I have had a friend visiting for the last few days. She is single, and has no children. Through choice. She has 6 siblings, and they have many children. She said "I am lucky that I have so many children to love in my life". She is very involved in the lives of her nephews and nieces. They have special "Auntie days" on a regular basis where they are the focus of her attention. She is a teacher, and she helps with homework, baby sitting, etc.

She said to me: "I dont think people who is of bad health like me should become mothers. It is unfair on the child."

Her situation is not remotely as bad as yours. She has a bad back, has had a few ops on her back, she has had a few ops on her neck, and on her ankles. She has various allergies, and asthma.

She said : "With my various ailments, I could not give a child the care it deserves full time. I can only offer good quality care and attention now and then, so that is what I do to my siblings children".

I really admire her for her decision.

My sisters health deteriorated after she had her dd. I know for a fact that her daughter worries a lot, and is scared that her mum shall die, or die early. She has had to do much more housework than any child I know has ever done.

Yanbu for wishing for a child of your own. Not sure going ahead and having one is the right thing to do though, so yabu on that account. The risk to you and the baby is too great. Sorry. sad

Personally I could not risk having another, as I was very poorly with SPD after my second, and it really is not fair on my other children and possible newborn to have mummy in such poor health after giving birth. It took 6 months to get back to walking properly. Cannot put any child through that.

hhhhhhh Fri 01-Mar-13 22:49:39

Message withdrawn at poster's request.

hhhhhhh Fri 01-Mar-13 22:52:46

Message withdrawn at poster's request.

Tolly81 Fri 01-Mar-13 22:53:07

I'm familiar with EDS, but even then the spectrum of disease is massive. I know a lady with it in her 80s for example who is still independent but she has had several operations. I think it would be really difficult to manage a baby without a better support network than you have. It might be different if you had any parents nearby (assuming they'd be willing to be very hands-on) as then at least item 2 would not be as daunting. Is there any prospect that they might move closer if you were to get pregnant? Another big concern which you may or may not have thought of is the child injuring you by accident as they get older. My 9mo dd is currently at an age where she grabs hold of me very hard and may pinch or bite me. Obviously she doesn't realise she is hurting me. It is sometimes very difficult to get her to let go though and she can move her hand suddenly. If I had EDS and very fragile skin I would think she could do me a major injury. She is too young to understand commands, reasoning, etc.
I think as the situation stands with no family support I would say it probably shouldn't be done. If that were to change, then I think it depends on what the consultant says in your individual case. I really wish you luck. I also think it would be worth at least looking into adoption in a little more detail as it would avoid so many of these issues. Again, I guess your case there would be improved if you had family nearby as they would want to know there were contingencies. Good luck, such a hard decision.

hhhhhhh Fri 01-Mar-13 22:57:19

Message withdrawn at poster's request.

I agree that this place is perfect for canvassing opinions on life changing decisions. Everybody does, however uncomfortable and emotive!

I wish you all the best! Such a tough lot to carry. I am sure you are a lovely aunt and godmother!

hhhhhhh Fri 01-Mar-13 23:00:06

Message withdrawn at poster's request.

NewbieT Fri 01-Mar-13 23:00:45

You sound like a wonderfully thoughtful, caring and considerate person, which are great qualities for any parent. I can't see any complete sticking points from a practical lifting / changing etc point of view, and you have what sounds like a wonderful support network. The employment situation sounds like it weighs heavily on yr mind too but work is transient and changeable for most of us at the best of times so I wouldn't base your decision on that. Could you talk to a health visitor about what , if any, extra support would be available?

We will all have the choice of taking on caring responsibilities for parents as we get older, to a greater or lesser extent. That's a duty for us all, I think it's cruel for anyone to tell you that you shouldnt have kids because of it. You have probably had to sacrifice a lot already, if you can have a child I don't think anyone could blame you for not wanting to miss out on a source of so much joy. I can't believe that any child, if you took the brave decision to bring them into the world, would begrudge any extra caring responsibilities.

To all those saying 'don't do it' , I hope you never have the misfortune to develop serious ill health or disability, but if you did , I can't imagine You would immediately have your kids adopted as it will give them challenges, , just because the OP knows the risk of this up front doesn't mean she shouldn't have a child. I know people brought up in families with disability and they are arguably enriched , wiser, more caring and compassionate than most because of it.

OP I hope you can get some real life advice too and very best of luck with everything x

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