Geneticist asked me if I was planning any more children

[Hurr1cane]

Why?

DS is an only just and has complicated problems. They haven't all been diagnosed yet.

Went to see a genetics councillor today and she asked about the family etc.

Then she asked me if I was planning on having anymore children.

I said I don't know... No... And she just wrote something and carried on.

Why did she ask this? Should I definitely not have anymore?

I'm guessing they'd want to know if you might need to be receiving ongoing support. Have you all had full genetic testing?

No. Just DS. They were looking at what other tests they could do. It's all research stuff now. She thinks it's going to be some kind of rare genetic disorder.

waiting for tests for my ds. perhaps I will be asked this too.

If you were planning on having more children then you might choose for both you and your partner to be tested to see if you are carriers for certain genetic conditions and to be given information on the likelihood of passing it on. You would be given counseling for this too.

He's had all the 'normal' tests though.
They're all clear

I'm still young (26) I don't think I want any more children because I don't want to see another human go through what DS has to go through but they keep saying I might change my mind as I get older.

I think if you did want more children then they can arrange for you to talk through the probability of having another child with the same condition. I guess that's why you were asked the question.

Thank you.

I thought she was maybe suggested I definitely shouldn't. I don't think I want anymore, but I also don't want to be told I never can. Is that ridiculous?

Not ridiculous at all. I suspect it is a standard question they ask everyone. Some genetic conditions are inherited but even if they are that doesn't mean another baby would definitely inherit the condition. Genetics is complicated which is why you would need to have a special meeting with a geneticist to talk through the probability once you have a diagnosis for your son and if you wanted another child. If it did turn out that there was a high chance of passing it on then there are options, ie embryo screening but you'd need to have counseling to talk this all through.

Would have thought it's so you can make an informed choice. With ds2's condition there's a 75% chance of a boy having it. Ds1 is fine thankfully. 50% chance dd will carry it so she'll need testing before having children herself. Wouldn't wish this condition on another child.

They can't tell you that you can't have any more children. They may help you make an informed choice. Until they know more about your dd's condition then it would be impossible for them to give you information on how likely it would be that another child would have the same condition.
When we saw one before we had dcs they talked us through the percentages and asked questions. They didn't give an opinion and everything was left to us.

Thanks everyone. It's likely that he has a rare, yet un researched condition apparently. It's all a bit shit

They normally try to give a prediction on the likelihood of a repeat in a future pregnancy. I was pregnant with DD3 when DD1 was diagnosed and they referred us to genetics urgently so they could be given odds and options (even though I told them that I'd never terminate).

Have you been in touch with Contact a Family (I think that's the right name)? They work with families who have dcs with very rare conditions.

No I haven't really. He has autism now but it was brought on by whatever else he has so it's atypical autism.

I had genetic testing because my maternal uncle has a old age degenerative genetic condition. He was diagnosed in his 40s. It affects male but females are carriers. When I was tested, the geneticists asked about future children plans, in addition of whether I planned to test DD. Because I planned to have more, she explained how the disease is passed on, probability, quality of life of males who have the disease etc. also touched on is the possibility of testing of unborn fetus and termination.

However it turned out I wasn't a carrier.

I don't know how they will test you and your partner as they don't know what is the condition for your child.

HTH

My uncle's condition is also that it's 50% chance the child will be either a sufferer (male) or carrier (female), if I'm a carrier. I think if the chances are lower, they probably might not have offered foetal testing?

I've just double checked and contact a family work with families of with a child with any disability. I've had contact with a couple of families through work with children with rare conditions and they found the help and support invaluable.

As I said before we've seen a geneticist due to an adult onset health condition. It may be worth asking for another appointment to talk through any questions that are swimming through your head.

We were told embryo testing ivf is only done for v few conditions e.g cystic fibrosis, and with rare conditions (like the one in our family), the only option was for dna testing of the fetus at 12 weeks. This may have changed (it was 6 years ago) but it might help you to know what your options are.

It's a standard question, so that they can try to give you as much advice as possible about what might happen with later children.

Even if they don't know for certain what the cause of your DS's condition is, they might be able to consider a list of possible causes, with how likely they are, and then do some complicated statistics to give you an idea how likely it is that a future child could be affected.

If you said you absolutely never planned to have more, had already been sterilised, DH had the snip, etc, then they would know they didn't need to work it out and talk you through it. On the other hand if you said "Actually I might already be pg" they would make sure they treated you as a priority for that information so that you could decide if you felt the odds were too bad to risk putting all of you through it again.

I'm not still with DSs dad, I'm not sure if she knew that though because we still co parent and he comes the all the appointments and we get on.

Thanks for all the advice, it's been really useful. I'm going to take today to sort of digest it all. It's not what you want to hear.

My sister is planning a family and I know it's something she's worried about now

I was asked this as DS has multiple health issues and they wanted to know if it was a chromosome issue or genetic. Went through testing and we are still not sure. Thy asked us as I I got pregnant they would rush the testing though and offer testing at an early stage in pregnancy.

It's a normal question. It is not meant to be discouraging in the least. It's so that they can look after you when you're pregnant again. I have 3 kids. 1 & 2 were healthy. But I had two subsequent pregnancies which ended because of chromosomal abnormalities. I then went onto have a healthy baby, my last. I was monitored very closely throughout my last pregnancy, mainly because of the emotional difficulties a mother goes through when she carries and loses foetuses due to complications related to disorders/syndromes. You will have access to optimum care, given your history and offered lots of support should you have more children. Of course you should have more if you wish. And yes, I was asked this question as well. It is a reasonable question.