do I tell my kids?

Guest456

Hi,

Serious responses only please.

My wife has had some miscarriages.
It's been very tough but we have managed to have children.

I get confused over DNA stuff but basically the reason for the miscarriages is genetic. If the mutation is fully passed to the child it will not survive beyond the first trimester.

This means that the children I have (that are living) may or may not have this genetic condition, but either way will be 100% healthy.

For a daughter or son this could be traumatic to hear about and live with and might cause problems for them trying to commit to somebody.

The questions are:

- do you think we should have tests done to find out for ourselves if our children have the condition?
- if we do the tests and they are positive, do you think we should tell them up front, and at what age?
- do we not do tests but tell them and let them decide?
- do we just tell them when we think they are about to committ to marriage with somebody
- do we just do nothing and let them find out themselves and find their own way?

There has been alot of pain involved in us finding out about this condition. Nobody in the family had known about it before. I would like to hear peoples opinions so we perhaps don't have to go through pain again telling our children about it.

I feel I should not hold this informtion back, but I don't want to burden them so that they find it hard to commmit to somebody.

Perhaps somebody else out there has been through something similar?

Tiriel

secrets will in my opinion and experience always cause a lot more pain than the honest truth. I think that you should find out whether or not they do carry the genetic problem, as you may be worrying for nothing. And as for it becoming a problem commiting to someone in the future, that is a hurdle that only they can cross but with support and understanding over the years they will have accepted their fate, if that is how the results come back.

Best of luck, I know that if it was me I would definitely want to know, I hate secrets as they make you feel like you are living in the dark. Be honest.. I think it's the safest option in the long run.

garthv

Yes because either way they are going to find out. Its better to know beforehand then to find out afterwards and you turn around and say "I knew all along".
Put yourself in their shoes.

forbairt

- do you think we should have tests done to find out for ourselves if our children have the condition?

That you are writing this post means you are thinking about it a lot ...

so my opinion would be have the tests ... find out ..

if you know for sure they have it then that leads onto your other questions

if they are fine do they need to know .. ?

seamus

I know someone who has been through a similar thing, though it only emerged when one of the parents' family found out, all of his brothers and their children had to go get tested for the condition.

TBH, I would be of the opinion that you should leave it. When your kids get to 16/17, explain the situation to them, and leave the decision to get tested, with them.

Guest456

16/17.... I don't know if I can live in ignorance for that long. That is partly what is bothering me.

I went through 6 years of sheer hell with this, when it was combined with some other issues, including severe post-natal depression after we eventually did have children (by sheer luck). Times were very tough but we have a strong marriage and have come through it all.

For the past 2years I guess we have just blotted it out from our thoughts out of necessity and for our own sanity but it's starting to annoy me now.

I don't know if I can live in ignorance for so long, yet if I find it's positive I know I'll be worrying for years. And what if it's positive for one child but not another? How will that make them feel?

And do I really want to tell a 16year old girl with 10,000% recommended hormone levels in her body that she might never be able to have children????

Perhaps I should leave it till 18?

Although part of me is thinking that talking about these type of things at 16 would perhaps show how serious pregnancy is and it might help avoid any unwanted pregnancies.

Zombrex

GaRtH_V wrote:

Yes because either way they are going to find out. Its better to know beforehand then to find out afterwards and you turn around and say "I knew all along".
Put yourself in their shoes.

Exactly,

Imagine if you didn't tell your kids and they had a miscarrige .. would you tell them then?

If it were me I would get each tested now that they are young. If they all come back negative then you can breath a bit easy (you should still explain it to them when they are older, and explain they should be tested again, you never know the test might be wrong).

If any come back positive then you have some time to think about how you are going to tell them. I think it is something that an adult would be able to deal with. There are other options available to them, and it is better that they would come to terms with something like adoption rather than have to face a miscarrige. I know it is very hard, and not to belittle your situation, but I know a couple who had to tell their teenagers there was a chance some of them might die due to a genetic disease before they reach 50, so it could be worse.

The worst thing you could do is not tell them ever. It is unfair to them, and imagine how you would feel if your daughter or your son's wife had a miscarriage you u knew all along it was a possibility

bbbbb

Visited a friend of mine last week who's in for chemotherapy, while I was waiting I read a leaflet "how to tell you kids you've got cancer". Depressing reading to be honest.

The up shot of it was you need to tell them, but what, how much information & when, as well as the language to be used depended on your circumstaces and their age/maturity level.

I would imagine your situation is similar but not identical. I would get advice or direction on this from the medical professionals that you've been dealing with.

CathyMoran

Personally I would get your kids tested, if they test positive then tell them when they are in their early teens.

chump

Tell them at 15/16... they don't need to know any earlier

And give them the choice to have the test, either you'll arrange it, or later in life.

Maybe tell them during transition year or 5th year, not 6th - you dont want them stressing

Leave it to them to decide when and how they want to get tested

The Sweeper

What age are they now?

Victor

First off, how are you and your wife?

---

Perhaps don't jump at things, but talk things over and do it in a planned fashion.

Is there an information service on miscarriages? Is there some professional advice on what to tell when?

Have you told your siblings / their children?

What happens if you die young, should you have arrangements for your children to be told.

Guest456 wrote:

- do you think we should have tests done to find out for ourselves if our children have the condition?

I think you need to discuss it in detail between you, with family and with professionals.

Guest456 wrote:

- do we not do tests but tell them and let them decide?

I don't think young children need to know.

Guest456 wrote:

- do we just tell them when we think they are about to committ to marriage with somebody

No, I think it should be sooner than that. I think they should know by 16-18.

Guest456 wrote:

- do we just do nothing and let them find out themselves and find their own way?

I think this might be cruel on you and them. You will know the distinct possibility of a misacarriage and you will see them go from the delight of being pregnant to the dismay of loss. Tehy will do this completed unprepared.

bug

Im sure you have spoken to your doctor at great length about this.

Could you tell us what the chromosonal defect is?
Has your doctor told you that it is possible for it to be passed on to the next generation.. ie grandchildren, if so what is the risk involved?

Im not a doctor but I think that if you are going to make your children aware of this possible defect that they may or may not pass on to their own children then there are a few things to consider.

All the scientific facts. And the risk assessment on their part.
For example. "Your kids will probably have this defect" isnt really something you could say.

If the defect is a 75% probability, then there is a higher chance of it occuring than the "normal" rate of miscarrige, where no chromosonal defects are present

ie it is important to instill hope...if there is hope there.

I would tell them when they are at an age where they can comprehend themselves and have some basic concept of science,possibly with a doctor present.

I dont think I would test them, but rather leave it to them when they are at an age where they understand and where having children is a possibilty, after puberty possibly.

savoyard

Have you spoken to a specialist genetic consultant? http://www.genetics.ie/clinical/

They might be the best people to give you some good advice on how to deal with telling or not telling your children.

Beruthiel

wow, you poor thing, it sounds like you both have had it tough.
speaking as a mother, I believe I would have them tested now, there is no use having this going around in your head for any length of time, it will drive you mad.
You don't say their ages but if they are still small then you can just say to them that it's a check up to make sure they are in good health.
I would tell them at an age when they can understand it 15/16 - I feel for you, having a 17 year old daughter myself, it would break my heart if I had to give such bad news. In saying that though, I have never pulled any punches with my daughter and have always talked straight to her. It can be difficult, but being straight with your kid is always the best way to go, whatever the situation.
I feel strongly you should tell them as soon as they are at an understanding age, leaving it until they are 18 or getting married is waaaay too late in my opinion and I believe if you leave it until then they will take it even harder.
To be ready to get married, looking forward to all sorts and then finding out would be a kick in the teeth. Better they know sooner.
Take some heart in what Bug says, you had kids didn't you? so, all is not lost!
best of luck

Chrissie

I can't claim to know anything about this type of situation as I've never experienced nor do I know anyone who has experienced this type of situation.

One thing I do want to say however is this: You are now experiencing what your children may or may not experience in the future.
You've had to learn for yourself & you've had to go through numerous miscarriages to find out!
If your parents had have known (or your wifes parents, not sure which side it comes from) would you have preferred for them to tell you, & when do you think you'd have wanted to be burdenend with something like that.

If you can answer those questions to yourself, then it should help you make some of the decisions you need to make.

For my two cents: I would have them tested. It may or may not give you piece of mind, but you don't have piece of mind at the minute anyway, so what do you have to lose.
If they test negative, you can live at ease knowing the condition has passed them by (as someone else said, provided the condition can't skip a generation etc, you'd need to be perfectly clear on all the facts)
If they test positive, you have a number of years to decide / talk to counsellors etc as to the best way to tell you're children.

As I've already said, if you don't test them, you're going to spend the next whatever number of years trying to decide how to do this anyway, maybe without any need.

I really don't see, in your position, what you have to lose in getting them tested now, you may have many stress free years to gain.

I think the worst part of anything in life is not knowing. Ask cancer sufferers or any people like that, they'll tell you the worst is not knowing as you hold onto glimmers of hope. When they then found out that they had cancer they had no choice but to realise well it has happened, life goes on & I have to find a way to deal with it, & they always do!

You will too, best of luck to you. I hope it all works out.

Khannie

Really sorry to hear about your situation.

Personally, I'd get them tested. Like ruthie said: No point in driving yourself nuts. If eventually do have to tell your child that they are in the same position that you were in, they at least have living evidence (themselves) that a full-term pregnancy is possible.

Guest456

Thanks for all the comments. I'll try to respond to all points raised.

My kids are in primary school and younger. I have no intention of telling them anything at this age obviously.

>>"I would get advice or direction on this from the medical professionals that you've been dealing with."
You don't want me to start on the issues we have had with the supposed professionals in the genetics centre. It's bad enough losing x children and not understanding it but to have to deal with the rude and obnoxious professional that we dealth with was a step too far... and boy did he and the hospital hear about it.
We had to really battle to get anybody to listen to us and agree to having tests done (as you have to be referred) only to end up dealing with the above character. We had one session with him at extreme expense and all he did was make my wife cry. He didn't have our file or history and completely misunderstood why we were even there...didn't realise we had had miscarriages at all.

Holles St. were excellent but they can only do so much. Their "counselling" consisted of having a 5-10 minute chat with us after each event.


>>"First off, how are you and your wife?"
Fine and thanks for asking. I ended up on anti-depressants though. It wasn't just the miscarriages though. I now have a great understanding of what your mind can do when you are under severe stress. I also had the "snip snip" so it can't happen again.

>>"Have you told your siblings / their children?"
Yes. It is a possible issue in 1 case.

>>"Could you tell us what the chromosonal defect is?"
It's a Robertsonian Translocation. It's quite rare. I'm not sure of the risk percentages. I think that the risk of miscarriage is 75% ish. I think the risk of passing on is 50% and I don't think it skips a generation.

>>"What happens if you die young, should you have arrangements for your children to be told."
That is an excellent point which I have not yet thought of

ferdi

i dont think a kid is ready to hear that until at least 15 years of age. its huge and younger children may not be equiped to deal.

the_syco

I know nothing of the condition, but is it cureable if caught early? Ask the doc. If so, you may be able to test them, and put them on some type of treatment.

=-=

Oh, and tell them when they're 18, so they can understand what you're telling them.

shakaman

First of all hope you and your partner are ok, and congrats on beating the condition and having a kid of your own!

I believe you should get them tested now for your own piece of mind, those thoughts rattling around in your head as Beruthiel said will wreck your head. if it's negative do you still need to tell them at an older age?....i.e. could the condition skip a generation to your grandkids?

The flipside of getting them tested now is, if (God forbid) your child was to have an unplanned pregnancy before the age of 16/17 as discussed earlier and they lost the child, they could become upset you didn't tell them sooner.

Test them now and if they're negative tell them bout the condition because they may want to get re-tested/it could effect future generations, if they're positive they'll need to be told anyway, best age I would guess is shortly after they sit their junior cert.

Best of luck
Shaka

bug

I believe you should get them tested now for your own piece of mind, those thoughts rattling around in your head as Beruthiel said will wreck your head. if it's negative do you still need to tell them at an older age?..

for his piece for mind...
the thing is, that its not for *his* piece of mind, its his *kids* lives, not *his*, that he is concerned about now. He's had what he wants...his kids.

Getting them tested at such an early age will relieve the OP's mind, Im not saying that that wouldnt be the relief of a huge burden.. but I dont think IMO that now is the right time to do it.

the kids are young they have their childhood.

If you identify by means of testing, one child, for example, out of say...three....who has this particular gene, for example, you may (or may not) project your own difficult experiences onto him/her or feel guilt or whatever towards this particular child. (im not a psychiatrist) but I have to say IMO that you have to be careful that you dont project your experiences onto such a young child in any way.

If anything when the time comes...use the benefit of your experience (ie some healthy kids, a positive end to a rather difficult situation) to guide them.
who knows said, theoretical, child may not even be that bothered about having kids, they are individuals after all.

tell them around puberty. Its not important to them now.

You have a few kids..at the moment they are interested in playing, their mates, the latest game, painting...whatever kids are interested in.

They are 100% healthy. You didnt bring them into the world with a chronic disease that they might die at the age of five or be crippled, its not a suicide gene in that respect. Let them enjoy the fullness of the little lives that they have...

they just might have a 50% chance of passing it on; (25% is the average of miscarriges by the way, 50% lower than the defect you specify), of having kids...and the thing is that in itself, passing it on, is a "might", the gene may not be passed on.

you haven't done anything wrong, dont project your own experiences... use it to help them, if it happens, if, if, if... nobody knows... did anyone tell you?

_Turismo4

I think it would be wise to get your children tested, but wait until they are older..
So there’s more of an understanding.

Guest456

Hi,

Thanks for the replies.

The genetecist did tell us that it was possible the kids had the condition. I can't remember if he told us the %'s.

We did ask him if we should have the kids tested and when but he took us up wrong and made some condescending remark and belittled us and didn't give us a chance to ask again. My wife was in tears at this stage so I gave up the meeting as a lost cause and let him babble on and just listened and then left.

I'm leaning towards not doing anything for the time being. Whether I get them tested or not isn't going to actually change anything.

I think not knowing the result until they are 16-18 is easier to deal with than perhaps knowing that 1 or more of them DO have the condition.

Victor

Guest456, do you want to try contacting

Miscarriage Association of Ireland
Carmichael House
North Brunswick Street
Dublin 7
Tel: (01) 873 5702 or (01) 872 5550 or (01) 872 2914
http://www.coombe.ie/mai/

http://www.oasis.gov.ie/birth/miscarriage_and_stillbirth/bereavement_and_childbirth.html

The Irish Sudden Infant Death Association share a building with them and they might also have useful information.

ArthurDent

My family has had to deal with something similar after one of my aunts tested for Turners syndrome - another genetic chromosomal abnormality that can lead to infertility/miscarriage and some other health issues. Luckily for me I had had 2 pregnancies and no miscarriages at the time this diagnosis was made, so it was not going to be an issue for me, however my siblings and cousins had to decide on whether they would test or not. most decided not to test straight away (many were still teenagers at the time), however we all were aware that this could be an issue for any of us. In the past year two of my cousins who were planning on marrying decided they would like to be tested so that they knew what lay ahead of them. I think we were all grateful to have been told that this was a possiblity for us- rather that go through the heartbreak of miscarriages. I wish you luck in deciding what is best for you and your children.