Tuesday, March 2, 2010

What if...?

I've always been the kind of person who has thought through all the possible outcomes to a situation and worked through them, even when they're not likely to happen. I remember saying to my husband 5 years ago before we got married "If anything ever happens to my parents, I want my (then) 7 year old sister to live with us". Bernard was flabbergasted that I even had THOUGHT of the situation in the first place as it's not something that is particularly likely. Whenever we talk about anything regarding death or bad things happening, it's because I brought it up in a "What would you do if..." kind of question. Bernard rarely knows how to answer because he hasn't really thought about it.

The situation we are in at the moment lends itself to soooo many different "what if" kinds of questions that my mind is working overtime trying to process it all. Usually right at bed time when I'm about to fall asleep. Most of the time, Bernard is already pretty much asleep and I whisper quietly "Baby, are you awake?" I hear a grunt and so proceed with my latest thought, "What are we going to do if..." - then after he says "I don't know, I haven't thought about it", I fall asleep and leave him awake frustrated at me disturbing his sleep (this isn't a new thing either, I've been doing that to him our entire married life!!)

Most of my questions lead to more questions and I know that it's impossible to know the answer to all of them before the baby is born, or at least, diagnosed... but just thinking about it helps me to prepare myself for whatever is to come.

Best case scenario, what if the baby lives and is perfectly normal? I know that medically it's unlikely - however I also know that stranger things have happened and so we can't completely rule out the possibility. Would we be glad that we found out that there may have been a problem, even if it turned out to be wrong? Hard question. But I like to think that in this situation, we would be so thankful with the blessing of life and health that we wouldn't be bothered being mad about a wrong diagnosis. Yes it's caused extra stress throughout the pregnancy, but it's also caused a greater awareness for these issues - I had never really known about skeletal dysplasia before this pregnancy, and it's also given me a greater appreciation for good health - particularly the health of our first born daughter. 

Worst case scenario, what if the baby doesn't make it? Will we have to go through all the labour and delivery and funeral in a country which we don't really call "home" without our closest friends and family around? Would we go back to Australia for the birth of the bub if we had a lethal diagnosis? Would that be in the best interest of the baby? Would the doctors even LET me travel back since I'm now a "high risk pregnancy"? Would we have the baby here in Hong Kong and then go back to Australia for the funeral? So many questions but I don't really want to even start looking into the answers to those unless we get the dreaded news. I think that while it may be helpful for me to think of the options, answering these questions would be particularly stressful and not something I want to do unless absolutely necessary. 

The "middle ground" scenario - what if the baby lives but has a form of dwarfism that she has to live with for the rest of her life? Is Hong Kong the best place to raise a child with disabilities? I've always said that it's not - and even before I was pregnant, I told my husband (in one of my "what if" moments), "If we ever have a baby with special needs, I'd want to move back to Australia right away". Now that it's actually a likely outcome, I don't know if it is the best option. I guess I need to really look into the medical system over here AND in Australia and see what each offers. From my online research, most of the specialist doctors are in the US - would we want/need to travel there for some of our medical advice? There's no doubt in my mind that socially, Australia is a much better place than Hong Kong for people with special needs and disabilities.

From reading other peoples blogs, I know that some forms of dwarfism (particularly Diastrophic Dysplasia, which is my suspicion) come with a whole lot of medical issues. Pretty much from birth, most children need to have some form of leg casts and braces to try and correct clubfeet. Many children also are born with cleft lips/palates which may need surgery to correct. Some babies also need braces or casts on their hands to correct the hitchhikers thumbs (which it seems like our baby has). Since this is such a rare thing (I think for DD, it's something like 1 in 500,000), do the doctors here have the experience to deal with these issues? Or the doctors in Australia, are they any better? I really have no idea of the answers to these questions. I just want what's best for my child.

I do know that if the baby lives and does have a non-lethal SD, more than anything I will be glad that she made it. And I would rise to the challenge of meeting her needs and raising her to the best of my ability. I sometimes feel completely inadequate for the challenge. 

When we first got the SD diagnosis, I remember crying with Bernard and saying "I'm not strong enough for this" - but I realise that really, no one is strong enough. No one thinks that they are going to have to go through something like this - but having to face it brings something out in you and you realise "I can do this. Not because I want to, but because I have to."

At the moment, everything feels so uncertain, there are more questions than answers. But I know that one by one, over the next less than 5 months until the baby is born, we will have to answer those questions. Not all of them, because I know that each ultrasound will give us more information and let us know what the likely outcomes are. I know that things probably won't be "certain" until the little one is here and we know more clearly what's going on.


  1. nic you are much stronger than you think.you know what sex the baby is talk strength into her body call her by name if you have one.know that she is wonderfully knit in your womb,know that she is beautiful in gods eyes and she will be beautiful in the eyes of her family.remember the lord will not give you a burden you cannot bare .this baby may have special needs because she is special regardless of the outcome god has chosen you to nurture this little life.god bless and all my love to you all sally

  2. I think you have a terrific attitude. I have a family member with a similar disease, and he's such a great person that no one sees his physical differences. May you raise just such a child! My thoughts are with you as you go down this path, which will of course be different, but not more than you can handle.

  3. I heard that a lot. People telling me I'm so strong and that there is no way that they could be that strong if it was them. God gives you the strength to get through anything.