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Telling SN kid they can't have kids
Dr's say it's out of the question

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#1 Rocket

Posted 05 January 2013 - 11:26 AM

A little bit of background info. DD, aged 9, has a very rare medical condition which primarily effects her respiratory system but also her heart through the stress the lungs put on them.

Dr's have told me that she can never have kids. The damage it would do to her would be too much. She literally couldn't handle it. So it is a 'should' never have kids because she will ovulate - a conscious no kids as she could still fall pregnant.

I've got a lot of faith in stem cell research and the possibility that it might one day help her live a longer, healthier more normal life.

Recently she's started talking about when she has kids, as children do. I don't know whether it's better to break the news now so it's something she grows up with and get used to the concept or wait until she's older. What would you do?

#2 *Natski82*

Posted 05 January 2013 - 11:29 AM

Gosh I have no idea. I am no help. I am thinking back to when I was 9 and I was still playing with dolls, I would have been shattered if I was told then. But I don't think there is ever a 'good' time.

Good luck sad.gif

#3 Expelliarmus

Posted 05 January 2013 - 11:32 AM

If it was my DD  I would want the Drs to speak to DD about it directly and gradually over the next few years. I would want her to know the basics of pregnancy before speaking to the Drs about it. I am imagining 12ish years.

She may still be able to have kids via fostering, adoption or surrogacy, so I wouldn't think she won't ever 'have kids'.

#4 brazen

Posted 05 January 2013 - 11:36 AM

i dont' know if i would yet, doctors can be wrong after all. maybe introducing it in a gentle and non personal way talking about how not everyone can have babies etc. paving the way without being definite (which it isn't)

#5 Maple Leaf

Posted 05 January 2013 - 11:37 AM

I would probably want a social worker or counsellor to speak with her gradually about it. I don't know if I would want the news to come directly from me as I wouldn't want her to resent me for telling her?

I also would make sure to speak about different families (either in books/shows etc...) who have kids through fostering, adoption and surrogacy.

#6 Soontobegran

Posted 05 January 2013 - 11:38 AM

I wouldn't confront the issue with her yet. I don't think at age 9 she is probably ready to understand the possible complications of her illness. Is it PH?
I think I would wait until she reaches puberty when she will be better able to understand but I would still hold out hope that by her childbearing years there may have been some advancements made that will mean it will be possible for her to carry a baby *fingers crossed*
If it is PH I have looked after a mum who carried to 36 weeks without having any negative effects but of course there are variants that matter here.
Lots of luck OP.

#7 Oriental lily

Posted 05 January 2013 - 11:38 AM

Over the next twenty years I think things like surrogacy being more mainstream and medical advancements means she probably has a very good chance of being a mum.

Perhaps not the conventional way but I would dismiss the idea of her ever being able to have kids.

If she asks just say things might e a bit trickier for her.
And dismiss the subject until she is older.

#8 whipmix

Posted 05 January 2013 - 11:42 AM

agree with the PPs who mentioned that perhaps start speaking to her about how babies come about but also explain that not everyone is able to have a baby or carry a baby to term, Perhaps chat about all aspects such as miscarriage, premature babies, surrogacy etc. She is only 9 and technology is always advancing she may very well be able to carry a baby to term.

#9 Acidulous Osprey

Posted 05 January 2013 - 11:46 AM

I'd talk vaguely about how for some people carrying a baby can be difficult but that there are advances made in medicine all the time.  I'd want her specialists to mention it in coming years when it is more age appropriate.

It's never going to be a pleasant topic to discuss but sowing the seeds that it may almost definitely be a huge issue for her from a young age without spelling it out may help in the long run.

#10 whatnamenow

Posted 05 January 2013 - 11:47 AM

And i would maybe trust that as she gets older she may realise as well.  DD12 has a genetic condition and while its her choice to have kids or not there is a good chance that any child she did have would have the same condition she does.  I was planning on having that conversation with her when she announced to the physio that she wasnt going to have kids because.....  and laid out a very good solid argument for her reasons.  Maybe just slowly educate her about exactly what her condition is and means to her body and let her start to draw her own conclusions.

#11 Mitis angelam

Posted 05 January 2013 - 11:53 AM

OP, I'm so sorry.  What an awful thing for you to have to deal with.  I don't feel able to give you advice.  But perhaps another perspective.

I had an uncle who was unable to have children as a side effect of treatment for his cancer.  His mother knew when he was in his early teens that he would never produce sperm.  She didn't tell him, and I believe he found out for himself as an adult.  It devastated him that she had had this knowledge and had never been honest with him but, in effect, treated him as a fool or somehow unable to cope.

I guess that's the other extreme of what to avoid; the sense that a parent has used their power to with hold important information.   sad.gif

#12 WhimsicalDragonfly

Posted 05 January 2013 - 12:00 PM

I think the PPs advice about discussing various ways that people become parents is a good one eg fostering, adoption, surrogates etc. that way when you tell her more information about the impact on her condition on her ability for actual childbearing & labour that she already knows there are other ways of becoming a parent.

For now, I'd also reflect on the qualities she displays related to wanting to have a baby. Eg. You're so good at xyz, you enjoy xyz, you're hooping one day you will have a baby to care for etc. These are qualities that can't be taken away from her no matter what happens and no doubt she'll be able to share these with kids in her life one way or another.

I'd also keep providing her with more info about her condition as time goes on, so that it's not a big shock, or 'big reveal' at a certain age eg 16, 18 etc.  And also means when you're answering questions along the way about puberty and reproduction that you can connect it with what she already knows about her condition.

Edited by WhimsicalDragonfly, 05 January 2013 - 12:01 PM.

#13 WhimsicalDragonfly

Posted 05 January 2013 - 05:56 PM

Just wanted to say sorry for unwittingly killing the thread!

Edited by WhimsicalDragonfly, 05 January 2013 - 06:09 PM.

#14 smithsholidayroad

Posted 05 January 2013 - 06:07 PM

It is a tough discussion to have when you know the enormity of their condition or disability but they see themselves capable of anything.

My son talks about his wife and kids when he is older and I guess it's so different to my normal that I find it hard to imagine what he'll be like as an adult and how he could physically handle a baby etc.

I tend to just be open to his discussions and guided by him and never say he can't or won't do anything. Except when he asked if he could be a firefighter and I said prob not as you really do need to be able to walk and run etc! His response " that's very offensive mum" wink.gif

Good luck and thinking of you


#15 Sif

Posted 05 January 2013 - 06:36 PM

I honestly would not tell her she can't have kids.

Many women on these boards have trouble conceiving, but most mothers don't stop their daughters dreaming about having babies just in case they end up having fertility issues.

There are many ways to have babies, including adoption, and even if your DD was specifically talking about giving birth, you just don't know what medical miracles may occur between now and when she is ready to have children. Not to mention the fact that one third of all couples actively choose not to have children these days, and I'm sure not all those choices would be made in childhood.

Telling her she can't have children, or even hinting at it, at this early stage seems like it would limit her horizons a lot when she still hasn't started to think about other things she might want to do as well - like travel or be an actor or have some sort of other career.

When she finally does seriously start thinking about having children, she will no doubt ask her own doctor's advice (I'm assuming she'll be an adult and responsible for her own healthcare by then?). And she may yet have a child. An old EB member (don't know if she is still is on EB, but I have her on FB) has CF and had a gorgeous daughter 7.5 years ago, it was a rough ride, but also amazing!

She's only nine.

When I was nine I wanted to be a pilot, when I was 10, I wanted to be a brain surgeon (I watched documentaries about surgery for fun!), never once did my mum tell me, 'Sif, you're legally blind, there's just no way...' I did work it out for myself, and I ended up doing a lot of things my mum and doctors never believed would be in my future...

#16 mumofsky

Posted 05 January 2013 - 06:43 PM

I would probably focus on the angle that she might have children a different way to how some people do - it might not be able to grow in her tummy, but maybe someone else might help her to have a baby, or she might be helping someone by looking after a baby they cant care for themselves which makes her really special and needed.

#17 Soontobegran

Posted 05 January 2013 - 06:47 PM

OP I have been talking to a friend who's daughter had a hysterectomy at age 16 months of age due to cancer and I asked her what she did about explaining why she'd not be able to carry babies and when the discussion took place.
She tells me that nothing was said until she noticed body changes that made it evident that she was entering puberty (11) but the conversation was one that she was guided through with the help of her medical team at the Children's Hospital who provided psychological assistance when the time came.

Perhaps it is something you should bring up with her specialists?
I understand these are different scenario as my friend's DD was definitely not able to carry a baby and with new and amazing advances in medicine it may be possible for your little girl but I thought it was good to know that there are people to help guide you through these conversations.

* Friend's little girl is now 30 and has 2 adopted overseas children and is very happy.
She had so much time to plan these adoptions as she did not have to undergo any fertility treatment and this made a real difference to the speed and ease that she got her precious children.

#18 opethmum

Posted 05 January 2013 - 06:49 PM

I would tell her as much about her condition as possible I would also be up front that having kids may prove difficult but not out of the question as there are plenty of other ways of going about having kids.
Tell her that it is not completely out of her reach it is that she has a few obstacles that may be at play. Get her to get regular check ups and find doctors who are willing to work with her and that she can rely on when the time is right and when she wants to begin the process of TTC and that she is well informed and knows what she is working with.
I hope you can find the words to help explain what she has and what she will go through, with a mum like you I am sure she will do fine.

#19 raindotdot

Posted 05 January 2013 - 08:05 PM

I have no good suggestion but wanted to share this with you.

When I was growing up, I knew a girl who had hepatitis since birth (her mother had it?). I don't know how her parents or doctor told her, but she would say to me (as 8 year olds) that she wouldn't live past 21. She's now in her 30s.

I can't imagine the burden that would have been growing up thinking you "can't" live your life like others.

#20 Guest_~Karla~_*

Posted 05 January 2013 - 08:26 PM

Like most of the others, I wouldn't specifically say that she can't have kids but I would talk about all the different ways people can have kids. My 6yo knows about adoption etc and that there are lots of ways people can have babies (it might help that we have gay friends who have kids, so it's easier for us to explain I guess?).

It's a horrible situation for you to be in though OP. I really do feel for you.

ETA, oh, and I agree with not passing on the burden of "worst case scenario". My twins have all sorts of medical issues and chances are they won't make it to adulthood (and if they do, they'll probably never be able to live independently). But I don't want them to think or know about that. I want their childhood to be as innocent and "normal" (ha, never thought I'd use that word about them! biggrin.gif) as possible. No need to put an expiry date or even just a dampner on the future right now.

Edited by ~Karla~, 05 January 2013 - 08:32 PM.

#21 SuboptimallyPooks

Posted 05 January 2013 - 08:30 PM

I agree with others, just make sure you introduce her to the concept of families coming in all shapes and sizes, and babies coming into families in all different ways original.gif

#22 ~~K~~

Posted 06 January 2013 - 12:00 PM

When I was a young child, and even into my mid teens, my cardiologists talked gently to me that it would be unlikely that I would be able to carry a child to term. My parents did talk to me about adoption etc but really only in general terms. I didn't really need them to tell me, I knew myself that I would have trouble.

With my first fiancé we really started talking about kids in my early twenties. My cardiologist at that point ruled it out completely. We looked at adoption, and discovered exactly how hard that is, so I would not necessarily push that angle too hard.

Luckily for me technology/drugs and luck meant that I was healthy enough to have my son in my very late twenties.

#23 Acidulous Osprey

Posted 06 January 2013 - 12:43 PM

QUOTE (raindotdot @ 05/01/2013, 08:05 PM) <{POST_SNAPBACK}>
I can't imagine the burden that would have been growing up thinking you "can't" live your life like others.

But some of our kids do grow up knowing that and it's just reality.  My 19yo knows his chronic condition will never ever resolve and we are at the end of the line for treatment and he will face surgery at some point of his life.

I don't think it's necessary to be completely upfront and blunt about it but quietly sowing the seeds that her reality is different to others is not cruel.

#24 SeaPrincess

Posted 06 January 2013 - 12:51 PM

I have a friend who can't have children naturally.  She has adopted 2 children, so her inability to have them naturally may not mean she won't have children at all.

#25 epl0822

Posted 06 January 2013 - 12:54 PM

I'm sorry about this sad situation OP. As others suggested I would emphasise that she *can* have kids, through several alternative methods. In 15-20 years time when your DD might start family planning, who knows, it might be a lot easier for women to have children via surrogacy; and there are lots of parents who have wonderful children through adoptions.

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