Baby and Pregnancy Loss--Useful Websites

I've had a miscarriage and I've also had a poor prenatal diagnosis at 17 weeks where the doctors told me they thought my daughter would possibly be stillborn or could die shortly after birth and the support structures for those situations are frankly awful here in Hong Kong. I know that other places have support groups, networks etc... Hong Kong has very little of that. For me, most of my support was found online through websites similar to those that you posted (there are others which are for particular situations/diagnoses etc) - most people have no idea how to relate...
 
Yes, nicolejoy. I think your situation was quite rare indeed--especially here in HK where when most people who go in for testing that turns up with results like you got, would opt to terminate the pregnancy outright.

But, miscarriage in itself is very common and while some people told me, "It's okay because it's natural" it doesn't make it any less of a loss to grieve over--no matter what stage of pregnancy (or in the case of stillbirth, afterward) or what the circumstances are.

I've certainly learned a lot of what not to say from my interactions with others when I was on the receiving end and also my interactions in particular with you, nicolejoy. I think we can all stand to learn something in this regard.
 
thanka2 said:
Yes, nicolejoy. I think your situation was quite rare indeed--especially here in HK where when most people who go in for testing that turns up with results like you got, would opt to terminate the pregnancy outright.
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That is true - but just to note, even in those situations I think that there is still great support needed. Those parents are still mourning the loss of their child, even if they did decide to terminate. Most of the time, it is a wanted pregnancy, a wanted child - and most parents do not take the decision to terminate lightly. Some may not even feel like they have a choice in the matter, they may feel like they are just doing what the doctor said they needed to do...

I have thought that if I had the time/energy, I would like to get involved in (or even start) some kind of a Hong Kong based support network designed for pregnancy loss, poor prenatal diagnosis, infant loss etc... At the moment, I don't have the time to do so...
 
nicolejoy said:
That is true - but just to note, even in those situations I think that there is still great support needed. Those parents are still mourning the loss of their child, even if they did decide to terminate. Most of the time, it is a wanted pregnancy, a wanted child - and most parents do not take the decision to terminate lightly. Some may not even feel like they have a choice in the matter, they may feel like they are just doing what the doctor said they needed to do...

I have thought that if I had the time/energy, I would like to get involved in (or even start) some kind of a Hong Kong based support network designed for pregnancy loss, poor prenatal diagnosis, infant loss etc... At the moment, I don't have the time to do so...
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What I meant by my previous post is that because of your rare situation, it would be unlikely to find anyone in Hong Kong who could actually relate to your specific situation. (As you said "most people have no idea how to relate"). I didn't mean that people who choose to terminate a pregnancy do not experience loss but their experience would be very different, I'd think than your particular situation. That's only what I meant.

Maybe in another country such as North America where people whose children are diagnosed with a critical condition early in the pregnancy are probably more likely to choose to continue the pregnancy there may be more support available.

Basically, I'm just reiterated what you said about finding support mainly from online resources and connecting to others that way--there just simply aren't that many people who get a diagnosis like you got at that stage in pregnancy and continue the pregnancy here in Hong Kong.

Yes, loss comes in many ways--and I really didn't mean to come across as I was saying that terminated pregnancies are any less of a loss than miscarriages or stillbirths. They all represent loss. But, what I am saying is that miscarriages are quite common--in fact its the most common type of loss of child up to 25% of all pregnancies worldwide end in miscarriage. So while the chances that people may receive a diagnosis like you received or even have a pregnancy terminated are less common, chances are very high that someone you know has had a miscarriage or may have one or that you yourself may have a miscarriage--just statistically speaking. And as a starting point that's a very good reason for everyone to try to be more prepared to respond appropriately.
 
I think that these situations are far more common than many people realise - particularly in this culture. I've had people tell me "their stories" and I would have never have guessed or known that they too had experienced poor prenatal diagnoses (sometimes the babies were perfectly fine, even though they had great concern during their pregnancies) or stillbirth/miscarriage. These are topics which many people don't talk about for many different reasons - in Hong Kong, people tend to sweep it under the carpet and say things like "It's ok, you can have other children" or "it was for the best" rather than mourning openly. I was in Australia shortly after my miscarriage and people their made me feel like it was natural for me to mourn for that lost pregnancy - here, I didn't feel that so much.

Yes, my individual situation, my child's individual diagnosis is rare. But there are thousands of different things that can go wrong - and all added together, it is not so rare.

According to http://en.wikipedia.org/wiki/Rare_disease, a disease is considered "rare" if it has a prevalence of between 1/1000-1/200,000 (depending who you ask). But if you add all of those people together, it is estimated that in the US, 1 in 10 has a rare disease. (I know that this is slightly off-topic - but rare diseases do make up a large percentage of poor prenatal diagnoses and infant/child deaths)
 
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