Incompatible With Life
Posted by Ling on September 5, 2011
So we had our Genetic Counselling session today…and to be brutally honest, it was a waste of time. She told us stuff that I already knew – thanks to Google and my medically trained brain. In fact, she was stumped by the questions I asked her. So stumped that we shall now see not 1, not 2, but 3 more specialists to answer my neverending questions – the “Alpha Thalassamia Guru”, the “Obstetrician” and the “IVF Specialists”. I asked about adoption in Australia and…she said…”Google it!” NO JOKE!!!
I don’t know how many times I have to say this because some people don’t seem to understand how serious this is… It’s got to the point where I just ignore what some people say because they just don’t understand.
YES, I KNOW there is 75% chance that we will have a healthy baby. BUT WHAT IF?
The EARLIEST they can diagnose the problem is 14 weeks. FOURTEEN WEEKS!!! That’s a long LONG time. So what would I do? Would I deny it if people asked if I was pregnant? (HECK, people already suspect I am pregnant when it’s just FAT!)
Definitive testing through chorionic villus sampling which has 1% chance of miscarriage.
Amniocentesis has 1 in 200 chance of miscarriage.
And then, imagine…just imagine…I find out at FOURTEEN WEEKS that there is a problem. What next?
Basically, alpha thalassaemia major babies are “INCOMPATIBLE WITH LIFE”! - These were the Genetic Counsellor’s exact words.
I wanted to know when such babies would die. She said shortly before or just after birth. But what are the stats? Tell me more! She didn’t know. Refer to “Alpha Thalassaemia Guru” (her words, not mine).
When I asked what would happen if I refused termination if this were to happen, she looked at me…rather shocked… She said that after working in the field for over 10 years, she had never seen a couple continue with such pregnancies.
Why is that? There are complications for the mother. What complications? She didn’t know. I wanted to know the exact statistics of death. She didn’t know. Refer to “Obstetrician”.
She wasn’t entirely sure about IVF. Refer to “IVF Specialist”.
Don’t know why I am upset considering I knew this months ago.
How would you feel if you got pregnant and had to wait 14 weeks to find out if it was an alpha thalassamia major baby who is “incompatible with life”? Would you be happy arranging a termination appointment…or would you be happy to wait till it died naturally – and if so, risk dying along with it??
YES! There you go! SO DON’T TELL ME THAT THERE IS A 75% CHANCE OF EVERYTHING BEING OKAY!! BECAUSE YOU DON’T KNOW EITHER! And if the 25% were to happen…what then? Yes, you can carry on living your life…whereas I…well…WE would have to go through with whatever we decide!
Gosh, I’m such a drama queen sometimes! I need to lighten up! Apologies, but life is pretty stressful at the moment. Some light-hearted food posts shall be making its way here sometime this week – *pinky promise*
Tine said,
Look, you’re not being a drama queen, and this is not a situation you should just “lighten up”. That genetic counselor you saw was a moron. It pisses me off when you try to ask “experts” like these questions and they tell you to “Google it”. Then what’s the point in seeing you in the first place?!
I’m sorry I’m no help here. Just got really irked by what the counselor told you, is all. It IS a serious problem, and people who don’t understand should really just STFU.
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Ling Tung Reply:
September 6th, 2011 at 11:19 pm
@Tine, I know, right?? I blame my stupid doctor actually – he is a dumba$$ and made out that the Genetic Counsellor would have all the answers…and she had none!! And yeah, seems like “Google” is the portal to answer questions these days!?!!
And thanks for the support Tine. Much appreciated! x
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rachel said,
It seems a bit like the controversial euthanasia doesn’t it?
Indeed nobody will be able to understand except those who have been through the same situation… Even then it will still be something really only you and Noah will journey through together. But that’s still ok because at least you have each other <3
Alas, it's when the rest of us can't understand that we shall pray instead!
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Ling Tung Reply:
September 6th, 2011 at 11:21 pm
@rachel, Thanks for the prayers my dear. Sigh. It’s true – some people don’t understand…like seriously…I don’t know how many times I need to explain it! There are many types of alpha thalassamia trait and sigh…some people have got the wrong info about it and think something else. *rolls my eyes*
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coco said,
if you’re drama queen every women will be one if they’re in such situation. sounds like the counselor you’re seeing is rather useless. google is a better counselor!
i’m so sorry to hear you going through this. must be so frustrating and heart breaking. if i were you i’ll probably keep trying until i get a healthy baby. i’m not religious so i’ll probably take the advise to terminate and try again. it’s better earlier than later.
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Ling Tung Reply:
September 14th, 2011 at 10:17 pm
@coco, Thanks for your kind thoughts Coco. It is pretty tough at the moment and very frustrating. It’s really hard to make the “right” decision!
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Ally said,
Sorry to read about your unsuccessful appointment. I listened to John Bryant speak at Greenbelt a few weeks ago – he delivered a great talk about Christian bio-ethics in genetic testing and IVF using case studies and put the audience in the position of those forced to make these decisions. Although the whole session was hypothetical, it was really tough to make certain decisions. I pray that the rest of your gurus you’re supposed to be seeing are more helpful.
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Ling Tung Reply:
September 14th, 2011 at 10:19 pm
@Ally, Thanks Ally. You know what – you always read and hear these things and you never think that it could happen to you…but when it does, it’s like…ARGHHHH!!!! Thank you for the prayers
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Sunday Funday #2 : Busy Bee | The Best Beauty Blog said,
[...] pretty full-on for me :-Monday – Genetic Counselling which was pretty crap (read all about it here) Tuesday – Nearly died after doing Body Attack class, LOL. I am highly unfit! Wednesday [...]
Sarah Science of beauty said,
Ling I’m sorry but that was a load of crap for you. I can’t believe you had to go through it. I guess in the genetic counsellors defence, she would counsel couples with a million different gentitic complications so she can’t possibly know the stats on all of them. But still, your dr should have tee’d up appointments with the specialists before the genetic counsellor so you could go to her with all the information and have an informed discussion/counselling session. Perhaps the average person doesn’t ask the questions you did, but I know that I would pretty much ask every one you did so surely the dr could have been better prepared for you.
I think the other problem is that the genetic counsellor is probably like a GP and unable to give you definitive answers so refers you to specialists.
I hope once you talk to the IVF specialist you have a clearer direction to go in. As I am not an expert so I could be wrong but I think that theyy would be able to do genetic testing on the embryos before implanting. My cousin has a daughter with huntington’s disease so when she wanted to have another child they had IVF using genetic selection to ensure that the subsequent kid didnt have huntingtons. I can’t see why your embryos couldnt be tested this way.
I am not sure whether your questions were rhetorical or not but I’ll answer them based on discussions we had when i was pregnant. I’m not trying to give you any advice but merely go through what we discussed.
Before I had Isaac I didn’t think that it would be that hard to abort a baby that had serious issues because I had no concept of how I would feel in doing so. I was making a completely clinical and non emotion theoretical decision. Though, interestingly, my husband and I declined to have the Nuchal translucency scan (down syndrome scan) because we figured we would’t abort so why know as it would just put a dampner on the pregnancy. After having isaac it would be a hell of a lot harder.
Earlier this year we were watching an episode of 60 minutes on Alisa camplin who’s baby boy died 10 days after birth from serious heart problems (heres the link though it will make you cry so you may not want to watch it http://www.youtube.com/watch?v=PPtlsEG0_Ds). Before watching the episode I was having a discussion with hubby on what we would do if we found out at the 20 week scan that our bub had a fatal heart condition and we were both in agreement that we would end the pregnancy. Then we watched the episode and we both completely changed our tune. Alisa and her husband got 10 amazing days with their son, they got to hold him, and photograph him and be parents to him. But I guess there was always hope that he might just pull through. So now i think that even if there is only 1% chance the bub will pull through, I would continue with the prgnancy. However, if my bub had a disorder that was incompatible with life then I don’t think that I could continue, not without that glimmer of hope.
Another thing hubby and I discussed was what would we do if the pregnancy was going to put my life at risk. It is a mothers instinct to do anything she could to protect her unborn child however my husband was absolutely emphatic that I came first – that we would not risk my life for an unborn childs. I found that tough to agree to but could understand that I am his soulmate and his best friend who puts out. As much as we wanted children I am the most important person to him. Now that we have isaac there is no way that i could put my life at risk. I couldnt deprive my husband of his wife or my son of his mother.
I hope like nothing else that IVF is an option for you so you never have to make that decision. But always know that what ever you and you hubby decide will be right.
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Ling Tung Reply:
September 14th, 2011 at 10:31 pm
@Sarah Science of beauty, Sarah, I agree with Rachel who commented on your comment. Very insightful.
First of all, that Youtube video is such a tearjerker. Poor helpless babies…
And thanks for the advice. It means a lot.
My hubby is the same as yours – if there’s anything which could compromise my life, he refuses to allow it. And I can understand why. I wouldn’t want to lose him either.
Hopefully, these specialists will have more answers…but I suppose at the end of the day, there are no definitive answers from anyone so we have tough decisions to make ahead of us.
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rachel said,
@Sarah Science of beauty
I don’t know you, but beautiful insights!!! I will remember them for…any future thoughts.
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Amber Crumer said,
Don’t be pessimistic. Just think positive and I am sure that he will come out as a healthy baby.
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Ling Tung Reply:
October 4th, 2011 at 9:19 pm
@Amber Crumer, Thanks for your kind words
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