So our worst fears were confirmed last night.
The Husband and I both have alpha thalassaemia trait.
I found out when I was in the midst of cooking dinner. He had gone straight to the Doctor’s after work and wasn’t able to pick me up so we could go together.
That morning I asked him, “What if it’s bad news?” And he joked and said, “Oh, I’ll just pretend everything is okay and I won’t tell you!” It’s so typical of him to joke about such things because he is an optimist!!
I was trying not to think about it so I had to occupy my mind by cooking dinner. And then my phone rang. He said “Hello” – I couldn’t distinguish if it was a happy news “Hello” or a bad news “Hello”. And then he told me. And then he passed me onto the Doctor to authorise him to allow us to have more specific blood tests done.
This was not my Doctor who I talked about in my previous post. This was another Doctor. And what is it with Australian doctors? Are they all stupid and un-knowledgeable???!!! “Erm…yes…I can’t remember if it’s two mutated genes or four or something…? But don’t worry about it, you’ll know more from the haematologist?”
In order to understand the next part of what I am going to write, I will have to give you a brief intro to the Aussie healthcare system. In UK, we get free healthcare through the NHS and if we want, we can go private and pay. In Australia, NOTHING is free. I believe there are 3 options, but I may be wrong, but this is MY understanding of it :-
1. You can go to bulk-billed surgeries (which are infested with people and there aren’t many around, I think) and they swipe your Medicare card which you then “think” you are getting the healthcare for free – but it’s a LIE…because you pay for it in your taxes.
2. You can go private and pay the extortionate fees.
3. You can go to a mixed practice. So, it’s split. You pay for some and Medicare pay for some. - AND THIS IS WHAT WE DO.
And now, allow me to RANT
dumba$$Doctors in Australia! We are paying you money. Money for what???!!!! You cannot even give us information on sweet F all!! My Husband and I paid you money for visiting you to get “blood forms” so you ticked a few boxes and signed it. My Husband and I paid you money for “blood test results” and all you can say is “Google it” or “See a specialist.” How ridiculous is that?????? It is a flawed healthcare system and we are still taxpayers!!!! Australia does not make sense whatsoever!!!
So what happened afterwards?
I stopped cooking dinner and ran onto my laptop and Googled the sh*t out of the words “alpha thalassaemia trait both parents”. Obviously, that’s the main concern for us because we were hoping to start a family in the next year or two. With my (limited) medical knowledge, I have already (pre) diagnosed which type of trait we have and the genetic statistics. There’s a 1 in 4 chance that we will have a baby with thalassaemia major – which means that they will die shortly before or after birth. And there are also complications to the mother of fetus with this condition. She could have convulsions and go into a coma and die too.
I diagnosed all this before he arrived home 5 minutes later. Who needs a useless Aussie doctor anyway?
He tried to make light of the situation with his usual cheery manner. He just held me as I cried.
In between sobs, I said… “You said I didn’t have thalassaemia but then I do!” He smiled.
In between more sobs, I said… “You said YOU didn’t have thalassaemia but then you do!” He smiled and said, “At least I have an excuse to be tired now.”
In between bigger sobs, this was our conversation
Me : ”You know there’s a 25% chance that we could have a baby with thalassaemia major which means they can die before or after birth!!”
Him : “But there’s 75% they will be fine.”
Me : ”But 25% is high!!!”
Him : “So is 75%!”
Me : ”But then what if I die too? Then you’ll have no wife and no baby!!”
Him : ”Don’t be silly, it’ll be okay!”
Me : ”But you said that before all this and look what happened!!!”
Him : ”…”
Me : ”Why does it have to happen to us?”
Him : “…”
And then I cried even more!!! And then, I said this… “And it’s gonna cost us soooo much money for all the genetic counselling!!” To which, he laughed. Which is kinda funny, but not. It is SO me to think about money and the lack of it we have in a situation like this.
And then I said, “Melbourne sucks!!!” Yup, everytime something sh*tty happens, I blame Melbourne! I just can’t seem to fall in love with this city. It’s depressing.
It’s going to be a long road ahead for us. I don’t even want to start thinking about all the dilemmas we have to face. I mean, what if I got pregnant…but we find out that the fetus has “problems”…??? What do you do? I don’t even want to think about the “A” word! (clue : the A word that some women have to face if they find themselves in undesirable situations)
It’s weird. I don’t know anyone else who has had such problems before. I mean, aren’t you just supposed to meet the guy, fall in love, get married, have kids and live happily ever after?? It’s those STUPID fairytales and romantic love films which I hate to watch. Nobody mentioned genetic mutations!!
I don’t handle traumatic news very well. I know that I do NOT want to talk about it with anyone else but my Husband. I haven’t even called my Mum. I know that I will most likely burst out in tears in a public place. And once the waterworks start, they are hard to stop! Writing helps.
And another good thing is that I can take comfort in the arms of God. Sometimes when bad things happen, people can blame God. But I know that with this experience, we can only grow closer to Him.
Thanks in advance for people’s well-wishes and prayers. I will update more when we go for our blood tests and genetic counselling.
(Photo credits to Ming Sum Raymond Shek. No anonymity there. He wanted to be named if I borrowed any of his photos for my blog.)