Couple Sues Doctor for 'Wrongful Life' of their Son

Jodi - posted on 01/31/2012 ( 34 moms have responded )




A NSW couple are suing their IVF doctor because they say their 11-year-old son should never have been born.

Although they say they love their son, they believe if they had been aware of the likelihood of his illness, they say they would never have gone through with the pregnancy.

Debbie Waller gave birth to Keeden in August 2000 following IVF treatment.

Only days after his birth, baby Keeden suffered a stroke that caused him to never be able to walk, talk or go to the toilet. He suffers permanent brain damage, cerebral palsy and uncontrolled seizures.

The stroke was caused by a rare blood clotting condition, antithrombin deficiency, which Keeden inherited from his father, Lawrence.

There was a 50% chance that Keeden would inherit this gene, however the Wallers say they were never made aware of this fact.

Mrs Waller told the Sydney Morning Herald: "We love Keeden now that he's here, but if we had the right information and the right options we wouldn't have gone ahead with the birth, not in the way we did."

They have taken their IVF specialist, Christopher James, to the NSW Supreme Court claiming ‘wrongful birth’ and seeking $10million in compensation to help care for their handicapped son.

The Wallers knew about Lawrence’s blood clotting condition and said they told Dr James about it.

In the first day of the hearing yesterday, Justice John Hislop heard that Dr James didn’t advise the couple on the likelihood of them passing on the condition to their baby and instead gave them details of a genetic counsellor at Wollongong Hospital.

The Wallers attempted to call the counsellor however the number was for the main switchboard and went unanswered.

The couple alleges Dr James didn’t mention the genetic counsellor again and began the IVF process.

David Higgs, SC, counsel for the Wallers told the court: "There was a duty of care on the part of Dr James to ensure that both he and the Wallers understood that this problem could be passed on and for there to be proper counselling and discussion about the other options they had, including the option of an anonymous sperm donor."

Lawyers for Dr James will argue that the referral to a genetic counsellor met his responsibility as an IVF doctor.

It isn’t the first time the couple have been in court regarding their son. They also previously launched a negligence claim in the High Court in 2006 which was unsuccessful.



Mary - posted on 02/01/2012




Here's the question that keeps running through my head...who would they sue if they had just gotten pregnant on their own?

The father's known clotting disorder was most likely not the cause for their infertility (it's usually only an issue if the mother has it, and can lead to multiple miscarriages). As well, this is a disorder that generally requires some type of treatment during the course of one's life. I find it nearly impossible to believe that this man could have reached adulthood with this disease and not have been advised about the potential for passing this on to offspring. The vast majority of people with this disorder have an ongoing relationship with a hematologist. I find it extremely unlikely that he did not. I also find it extremely unlikely that he didn't know about the possibility of passing this on to a child well before ever even trying to conceive the "normal" way with his wife.

IMO, this RE doc fulfilled his obligation to this couple. They went to him for assistance in getting pregnant - and he helped them achieve that goal. He did advise them to seek genetic counseling. These are grown adults without any noted intellectual disabilities. The onus was on them to follow up on this, if, at that time, it was of importance to them. I'm guessing that they didn't think it was all that big of deal; after all, the father has lived with this condition his whole life without the severity of complications experienced by his son.

Having an antithrombin deficiency does not automatically equate to having a child like this boy. This child is in the state he is in because he suffered a stroke after birth. Although the likelihood of this is increased because of this condition, it does not mean that it is the typical, expected course for all those who have this disorder. If it was, the father himself would not have been in a position to even be a father himself. Even if this couple had been responsible enough to follow through with seeing a genetic counselor, they still would not have been told that their baby would have ended up the way that he is. They would have been told that there was a 50% chance he would have this disorder. The chances that he would suffer a stroke at birth with this type of catastrophic outcome would have been even more remote. If I had to guess, even if they had seen that genetics counselor, they still would have gone through with IVF, and would now be suing them instead.

Jodi - posted on 01/31/2012




Joy, that's exactly where I am at with it, that there was fault on both sides. I can't see the lawsuit succeeding because (1) a genetic test was only going to give them the probability/likelihood of passing the condition on (so therefore, it was never going to determine whether it would or would not happen), and (2) it really WAS their responsibility to follow it up.

I actually feel that the doctor DID provide them with the information they needed in order to do something about it. It really wasn't his responsibility to follow up on it. He probably assumed that if the couple were going ahead with it, that THEY had followed up. After all, they DID decide to go ahead with it without the genetic testing. Who would do that if they were hell bent on getting this tested in the first place? That was just fucking stupid.

[deleted account]

The doctor says he referred them to a genetic counsellor.

"The Wallers attempted to call the counsellor however the number was for the main switchboard and went unanswered.

The couple alleges Dr James didn’t mention the genetic counsellor again and began the IVF process."

Those two sentences tell me that both parties dropped the ball. The parents should have followed up with the genetic counselling and the doctor should have as well. When I was pregnant with Jacob, they tested me to see if I had the Cystic Fibrosis gene because my cousin died of it. If I had been a carrier, it wouldn't have changed my mind about having him, but it would have made me more informed. These people didn't do all they could to inform themselves on the father's (and potential child's) condition and that falls on them, not the doctor. I mean, really, they got a switchboard so they just gave up? Hmmmm.....

However, the doctor didn't fulfill his responsibility either, IMO. He should have followed up, ensured that before he began the IVF treatments, they were as informed as they wanted to be. In the end though, I'm of the opinion that they shouldn't be awarded anything.

Jenn - posted on 02/04/2012




It is the parents at fault, not the doctor, they knew there was a possibility otherwise they wouldn't have mentioned it to the doc! He told them to seek a genetic counselor, he is not one, after all This all smells like a pathetic attempt, 11 years later, to pounce on an opportunity to score using their child.

Merry - posted on 02/03/2012




After talking to my husband about this I have to change my stance. He is in criminal justice for his degree and he explained how the law works about this and the dr is not at fault.

Legally the dr did all he had to by referring them to the geneticist.

And he doesn't have to babysit the couple and check up on them and make sure they did their homework.


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[deleted account]

Somethings not sitting well with me.I feel the parents have some sort of other agenda..i don't know..just for the money.I have no clue.I didn't feel comfortable reading the article.Somethings off.I think its for the money.They knew full well the chances themselves.

There chancing the claim and hoping they win.There very persistent.Its not for the right intentions though i feel personally speaking.

Stifler's - posted on 02/03/2012




I agree with Karla and Laura this is the parents fault. You don't just not follow through with ringing a genetic specialist when you know you have this in your genes. They wanted a kid so bad that they didn't care and now they're going back on it.

Ania - posted on 02/03/2012




It is hard for me to believe that they were not aware of the gene and its high passing rate....they just need money to raise their son, that's why they are following with the lawsuit. If it is true then their actions are extremely unethical

Tam - posted on 02/03/2012




I don't think the doctor should be held accountable. In my own circumstance, being pregnant with twins, my OB asked if I wished to follow up with a high risk geneticist due to my age and my carrying multiples. I said yes, she gave me the number, and that's that. She fulfilled her responsibility to me by giving me the referral.

If I'd been unable to contact the high risk OB, I would have asked my doc for another referral to someone different. I fail to see how this is so hard to do with this situation as well.

The fertility doctor fulfilled his responsibilities - he helped them get pregnant. It's not really his place to stay on them about a genetic possibility that they were well aware of. It'd be like if I tried suing my doctor if one of my kids turns out to be diabetic - sure, it runs in the family, but it is definitely not the doctor's fault. We take on all responsibilities of our children from the moment we choose to engage in acts that could result in conception. Getting a raw deal sucks, but it doesn't mean someone owes you for your own choice.

Mary - posted on 02/03/2012




Rebecca - I would hazard a guess that was exactly their thought process. The truth is most people with this disorder are able to live their lives without any major or catastrophic issues. This boy really is an exception, even among those with this disorder.

I don't even really fault them if that was how they felt at the time. I do fault them for their mentality that someone must be held accountable for that which is really just an act of nature. Yes, the embryo may have been created outside the womb, but that is not what gave this kid this condition, nor did it cause him to stroke.

Laura, I really think, for the sake of any further discussions, you just need to admit that you have an (alarming) bias against doctors, and think that they need to function at a level of perfection that is simply unattainable in humanity. An RE's job is to try to assist an infertile couple to get pregnant. He is neither responsible nor accountable for the future health and well-being of that child after conception. He is also not a geneticist, nor a babysitter. He gave them a referral. The chose not to follow-up. He cannot, and should not, be held responsible for their carelessness or inactivity.

Sally - posted on 02/03/2012




Im just wondering if they had been able to fall pregnant naturally , would they now be sueing god. THEY knew there was a 50% chance of this being passed on. Why didn't they check or did they believe the doctor could workwonders and make it disappear. Most people having a baby were there is a chance something could be passed through genes would make every effort to find out. If it was going to effect their choice to go ahead or not.

[deleted account]

@ Mary -- I'm guessing that the fact that the Dad had the disorder made them a bit dismissive of the risk to their children. After all, it would be easy to say, gosh, I have this and I'm fine so if my kids get it it will be OK. Not saying that was their thought process, but it wouldn't surprise me if it was.

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Laura: Pre-implanation genetic testing is optional and expensive (abou $5,000 here). And that's today -- I'm guessing it would have been more costly 10+ years ago, if it was even available. And who knows if this particular disease could have even have been screened for anyway.

[deleted account]

Elfrieda: You are thinking of Handle with Care. It was a Picoult book. Different condition, though.

I feel bad for the parents, but is this condition something that could even be tested for? Just because something is genetic doesn't mean they have the ability to test for it. My guess is that parents had enough concern about it to ask, but obviously not enough to follow up. I'm guessing they never in a million years thought the kid would have had the issues he had even if he inherited the condition, because otherwise they would have been more diligent in following up with the genetic counselor. Basically, I think they are just looking for someone to blame. However, it's not this doctors fault that their child had a stroke.

Merry - posted on 02/03/2012




I do think the parents are retarded if they couldn't google the info and if they gave up so easily on the genetic call. But legally I think when a specialist creates an embryo to put in a woman he or she has the responsibility to inform the parents as best as possible about the baby they just artificially created.

Shouldn't there have been genetic testing on the embryo before implanting it to the mom?

The parents are at fault for being dumb,

But I do think legally this is the drs fault. Or the facility where they got the ivf.

Merry - posted on 02/03/2012




I think the dr is at fault and while they should have been more proactive, legally he is at fault for not being sure they knew the risks.

Sally - posted on 02/02/2012




Im trying really hard to find a way to answer this post. I can't , im speechless. I think the whole thing just smacks of money.

Iridescent - posted on 02/01/2012




I find this ridiculous. The family knew, whether they claim they did or not. They were not clueless. Had they not had problems with infertility, they still would have had a child with a genetic defect in all likelihood - so who would the lawsuit have been against then? This is only causing harm. They want someone to pay because their child is disabled, when in fact 1 in 5 children is disabled, accept it and move on.

Genetic diseases that are known to be genetic do not just get ignored. We've already had genetic counseling from the time my daughter was 6 months old on the risk of having other children. This was standard way back in the 1960's. It is our responsibility to schedule a full genetics appointment when she comes to childbearing age to discuss this with the doctors herself as well. It is not safe, and chances are a pregnancy would kill her, but if she were to survive there is also a 50% chance any offspring would then die at birth. Any genetic disease, this isn't new information. If they don't want their son they should simply institutionalize him and walk away, not make a circus sideshow of him.

[deleted account]

I can imagine how uncomfortable it is for the social circle surrounding this family - people would be struggling to think of conversational topics at the weekend BBQs.

Karla - posted on 02/01/2012




"Dr James didn’t advise the couple on the likelihood of them passing on the condition to their baby and instead gave them details of a genetic counsellor at Wollongong Hospital."

"The Wallers attempted to call the counsellor however the number was for the main switchboard and went unanswered."

He referred them, they didn't follow through or tell Dr James that the number didn't work... The parents dropped the ball. Most intelligent people would have called back to Dr James' office immediately upon learning the specialist number didn't work and would have gotten another number or referral.

And they wait 11 years to decide to sue? no.

Without further evidence of neglect I'm on the side of the Doctor, he shouldn't need to hold their hands all the way to the specialists door.

ETA: I read the rest of the thread and saw the explanation for the 11 years... I still say "no" though.

Tara - posted on 02/01/2012




Wrongful life suits rub me the wrong way.

And in this case I think the IVF doc did what he was supposed to do, he referred them to a specialist, they chose not to call back, they chose not to pursue the matter further, they chose not to bring it up again.

Granted the IVF doc could have asked a simple question after the referral was given, like "How did the appointment with the genteticist go?".

However I don't think he is legally responsible for this child's illness.

If however there had been tests done, multiple screenings etc. and a child was born with a genetic illness that should have been caught on said screenings etc. and was not simply due to human error or someone getting tests mixed up etc. than I do think there would be grounds for a wrongful life suit.

Caitlin - posted on 02/01/2012




The doctor reffered them to a specialist. If I get referred to a specialist and I can't get through for whatever reason I call again. If the number is wrong, I find the right one.. I don't just go "oh well, it's no big deal". Doctors study basic medicine, but when they specialize in a certain field then they get the training specific to that field. The IVF doctor doesn't specialize in genetics, which is why he passed the couple on to someone who knew more about it, I don't blame him for simply not googling the disorder because geneticists have access to MUCH more information that can be found on wikipedia. Kind of stupid if you ask me.

I have an issue with "wrongful life" suits.. When you get pregnant and decide to have a child, it is a huge risk. If there was a complication during the delivery and the baby was deprived of oxygen leading to mental retardation, would they sue too? There is ALWAYS a risk in having a child, and they still went through with it. My doc always told me my risk of have a baby with downs.. (not very high - im youngish) and it was my choice to get screened for it (never bothered).. He reffered me to the clinic for a amnio, but I didn't do it - therefore - my problem if any of my kids were born with downs..

It was a Jodi Picoult novel called "Handle with Care". The girl had brittle bone disease.

Amy - posted on 02/01/2012




Just out of curiosity who would they be sueing had they been able to conceive the old fashion way?

As a parent I feel it's my responsibility to arm myself with as much information as possible and since they knew about this condition why didn't they keep pressing for information instead of being so "ho-hum, no one answered the phone".

Jodi - posted on 02/01/2012




"In 2006, they launched an unsuccessful "wrongful life" case in the High Court on Keeden's behalf, in which he sought compensation for future loss of earnings and opportunity."

"Lawyers for Dr James also argue it is not the responsibility of an IVF specialist to find out whether rare genetic conditions, such as antithrombin deficiency, can be passed on from father to son.

They claim that such responsibility as does exist was met by the referral of the Wallers to the genetic counsellor".

Jodi - posted on 02/01/2012




Cathy, I would suspect that if it was in the High Court as a negligence case in 2006, it took quite some time to get there, and that was 5-6 years ago. It can take years for a case to get to the High Court because it has to go through ALL of the lower courts first (just as a reference....our High Court became the replacement/equivalent of the House of Lords). So yeah, I can understand the time it may have taken there.

THEN, they failed on the negligence issue, so have obviously found some other loophole to use as a basis to sue. But I can't explain why it took between 2006 and 2012 to get this one happening.

Jodi - posted on 01/31/2012




It says that they DID know of the husband's condition, and specifically made the Doctor aware of it, which is why the Dr referred them to the genetic consult. But are claiming they were not aware that there was a 50% chance that the child would inherit the gene.

Now, I just spent 10 minutes doing a bit of a brief google, and was able to find information that makes it clear that if it is genetic, it is a dominant genetic disorder which means that the risk of passing on the defective gene is 50%.

So if it took me 10 minutes to google this information, it isn't rocket science, right? Now, armed with that information, I would absolutely be concerned and would NOT risk IVF without having consulted the genetic specialist. And you know, there is more than one genetic specialist around. It's not such a long way from there to go to Sydney. I think that if they were REALLY concerned, then they would have followed through before taking the risk.

Also, just to add, it wasn't that they sued a high school, they had previously launched a negligence claim on this same issue in the High Court (which is Australia's highest court and final place of Appeal). And now they are trying it this way.

Kelina - posted on 01/31/2012




Well I'm curious about a couple things. 1) is referring a couple undergoing ivf or attempting to get pregnant a routine thing? I would assume that people having issues getting pregnant would usually be referred to one I'm assuming to cover the doctors ass, and 2) were they aware that dad carried the gene? If they were aware and didn't go ahead with the genetic counsellor then that's their own fault. However if they were aware and the doctor just said, oh you know it's routine for me to send you to a genetic counsellor before we go ahead with this, but ehre's probably nothing wrong, they might have just thought when they didn't get an answer or a call back, whichever the case was, that it was no biggie. They weren't getting pregnant for another reason ie. she had strange ovaries, or dad had a low sperm count that got destroyed by moms super mucous lol. I think doctor also should have asked them if they got ahold of the genetic counsellor and if they didn't why not? That way it would have been totally and completely their fault. As it is if they didn't know about dad's genetic condition and weren't at least asked if they'd seen the genetic counsellor and did they still want to go through with treatment, then the doctors partially at fault. However I don't think they have a chance in hell of winning. When I got pregnant I knew there was a chance there would be something wrong with my child even though we have no genetic conditions on either side of our families that we know of. It's just always a possibility. Some babies aren't born as perfect as we envision.

Jayce - posted on 01/31/2012




Elfrieda, it is a Jodi Piccoult novel. I read it but I can't remember the name.

I'm conflicted about this one. Suing for wrongful birth, to me, sounds like you're saying you wish your child had never been born. They (parents) should have followed up with the genetic counselor, especially if dad knew he had this condition. But I also feel the doc should have asked if they'd called the counselor. I can see the parents point but it just feels wrong, IMO.

Jodi - posted on 01/31/2012




Okay, if a doctor referred me to a genetic counselor before getting pregnant...I would assume there was a reason behind it...that reason *most likely* being that something could be passed to my future baby. If having something passed to my baby was an issue, I wouldn't have had the attitude that "Oh, nobody took my call, so I guess it doesn't matter now."

I do agree though, they are both at fault, the doctor definately should have at least asked if they got in contact with the genetic counselor. That being said, I do not believe they deserve a penny. He referred them, and even though he should have made sure they had been informed, he did make sure to make them aware that there is someone else out there better suited to that particular need than himself. He is not a genetic counselor, it was not his responsibility to run any tests.

Lastly, the sued his highschool in I don't have the details on that case, but two lawsuits, so soon together, and the second being 11 years after the fact...sounds to me like they're looking for a pretty penny. Not that raising a handicapped child is cheap, but suing people is not the way to go IMO.

Jodi - posted on 01/31/2012




LOL Elfrieda, it sounds like something she'd write about!!! I've only read a handful of her books, but there is definitely a formula.

Elfrieda - posted on 01/31/2012




I think I read about this exact scenario in a novel... probably a Jodi Picoult one?

Rosie - posted on 01/31/2012




well...i'd say i'd be rather pissed that an IVF doctor never mentioned anything about that genetic condition. i think they are deemed something considering it caused their son damage. not really sure i like the way that the suit is named..wrongful life seems so offputting, but yeah, i think they are entitled to something. the doctor was neglegent.

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