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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.

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Couple sues IVF doctor for wrongful birth

Lifelong suffering … Debbie Waller says her disabled son, Keeden, 11, would not have been born if she had been warned about the chance of his hereditary condition. Photo: Quentin Jones

DEBBIE and Lawrence Waller love their 11-year-old son, Keeden, but they believe he should never have been born.

Just days after Mrs Waller gave birth in August 2000 following IVF treatment, Keeden suffered a massive stroke that caused severe brain damage and meant he was never able to walk, talk or go to the toilet.

The stroke was the result of a rare blood clotting condition known as antithrombin deficiency which Keeden inherited from his father.

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Tragically, the Wallers did not know there was a 50 per cent chance that Keeden would have the defective gene.

They are now suing the IVF specialist who oversaw Keeden's conception – Christopher James – in the NSW Supreme Court for what is known as ''wrongful birth'' and seeking compensation in the order of $10 million for the lifelong care of their handicapped son.

''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,'' Mrs Waller said from her home in Kangaroo Valley yesterday.

''Had things been done right, Keeden would never have been here. He would never have to go through the suffering he goes through – the seizures and all.''

The case raises a number of legal questions and could set a precedent for other parents whose children have disabilities.

The Wallers told Dr James about Lawrence's blood clotting condition, and they claim he breached his duty of care to them by failing to take proper steps to find out whether it could be passed on by just one parent.

In the first day of the hearing yesterday, Justice John Hislop heard that Dr James did not seek to find out the answer himself, but handed the couple the name and phone number of a genetic counsellor at Wollongong Hospital on a post-it note. It is alleged the note was given to the Wallers in the context of a discussion about fertility not genetics, and that the phone number was the main switchboard for the hospital rather than the counsellor's direct line.

When the phone went unanswered the Wallers did not call back, and it is alleged that Dr James did not mention the genetic counsellor again, and began the IVF process.

''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,'' counsel for the Wallers, David Higgs, SC, said.

It is not the first time the Wallers have been to court in relation to their son. 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 will 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.

‘‘There is no question that Debbie and Lawrence Waller have experienced a tragic event and that the Keeden Waller situation is extremely sad,’’ counsel for Dr James, Jeremy Kirk, SC, said.

‘‘But they are intelligent adults who were advised to speak to a genetic counsellor. They chose not to take up that advice.’’

The Wallers' solicitor, Bill Madden from Slater and Gordon, said that the compensation claim was largely made up of the costs of accommodation, food and caring for Keeden full-time.

“Neither parent has been able to work much; they've had to modify their home – the financial impact of something like this is huge.”

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The study was extremely large following one-thousand two
hundred and sixty Chinese women who were undergoing their first
IVF who were free of endometriosis and PCOS. The women were
divided into two groups: those who had diminished ovarian
reserve (FSH>10 IU/L) comprising one hundred and eighty
seven women and those with normal ovarian reserve. All women
underwent the same IVF protocol.

In women with poor ovarian reserve a testosterone level greater
than 47.85 ng/dl was able to predict pregnancy outcome (with a
sensitivity of 52.8% and specificity of 65.3%). Day three
testosterone was correlated with the numbers of mature
follicles on the day of the hCG trigger and also indicated the
total number of days of gonadotropin stimulation and the total
dose of gonadotropins that would be required. The study
concluded that:

“In women with diminished ovarian reserve, basal T
(testosterone) level was a predictor for the number of large
follicles on HCG day and pregnancy outcome; but could not in
those with normal serum FSH.”

“Basal T (testosterone) levels were associated with both days
of stimulation and total dose of gonadotropins, indicating that
lower level of T might relate with potential ovarian poor
response.”

Interestingly there have been recent studies showing that women
with poor ovarian reserve who receive a pre-treatment phase of
testosterone and DHEA (another androgen) have better IVF
success rates. Your day three testosterone, if low, may
indicate that you may benefit from some form of androgen
pre-treatment to help your IVF to be more successful. The study
further concludes that:

“Basal T level is a good predictor for pregnancy outcome and
number of large follicles on HCG day in women with diminished
ovarian reserve. Basal T level is equally helpful in tailoring
the dosage of gonadotropins to individual and identifying
potential poor ovarian responders, subsequently, making
individualized COH (controlled ovarian hyperstimulation)
strategy before entering IVF cycles. It also gives evidence to
androgen supplementation in infertile women. Those women with
lower basal T (testosterone) levels would benefit from T
supplementation during COH such as improving response,
decreasing the amount of gonadotropins used and the cost
accordingly.”

Your doctor will usually evaluate your FSH (follicle
stimulating hormone) and estradiol on day three to assess
ovarian reserve before IVF, asking for a testosterone test too
could help to fine-tune your IVF for greater success.

1. Association of basal serum testosterone levels with ovarian
response and in vitro fertilization outcome
Qin, Yingying1; Zhao, Zhiyi1; Sun, Mei1; Geng, Ling1; Che, Li2;
Chen, Zi-Jiang1
Reproductive Biology and Endocrinology 2011, 9:9
ISSN:?1477-7827, DOI:?10.1186/1477-7827-9-9

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