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Tuesday, March 25, 2008

Parents Sue Over Birth of Child With Hemophilia

The newswires are alive with this story: An Australian couple are suing their doctor because their baby was born with hemophilia. The mother knew she was a carrier. She knew in-vitro fertilization could not guarantee a daughter... and the result is a gorgeous baby named Jess who apparently has caused such emotional damage that the parents want financial retribution. Now age three, Jess is at the heart of what could be the first of a kind lawsuit.

"We love our little boy, but we are very sorry he has to go through so much in his life," the couple told The Sunday Telegraph (Australia)."We tried everything to avoid this situation, and now our boy has to go through all the pain and treatment in order to survive. We now face the fact that Jess will require treatment for the rest of his life."

Part of me wants to shriek get real, grow up, toughen up, face the real world. Suffer? After reading about what inhibitor patients endure, it's unlikely Jess will suffer much. After visiting so many developing countries where NO treatment exists, Jess is living a dream come true. Good family, great health care system, plentiful medicine, no threat of viruses... from where I stand they are very lucky people... yet still they are seeking retribution.

http://www.foxnews.com/story/0,2933,340737,00.html

"Paul and Fiona (who do not want to reveal their surname) are claiming damages for the shock and nervous anxiety caused by the unexpected nature of the birth." Get in line... thousands of families have dealt with it--with no family history, no warning whatsoever. Their claim seems to negate all the emotional suffering the rest of us go through--and eventually get over.

I was speaking to another mom today about this case, which has everyone buzzing. She thinks the parents are just not informed about hemophilia today (the mother's brother had hemophilia and was crippled). But I wondered, are they not aware or too aware? Are the parents profiting from something we all learned to accept, and they under took this risk willingly? They claim no one told them Fiona was carrying a boy, despite ultrasounds (and she didn't ask?); had she known she would have aborted. Are they truly in agony, three years later? Are they just not aware of how good life can be with hemophilia in developed countries? Or are they looking to make a killing from the physician's insurance, which also drives up health care costs for everyone?

But wait. In speaking with this mom tonight, I realized we are only skimming the surface. Snap judgments based on media reports are dangerous: what is the media not telling us? And despite what they print and even what the parents tell them, perhaps there is a bigger, more important plan here. Perhaps the situation wasn't handled well medically. After all, they were assured at some point that what was selected and implanted was a female embryo. They must have paid good money for this procedure. Throughout her pregnancy, if she is correct, no one told the mother she was carrying a boy (hard to imagine no one thought to ask!! and where were the ultrasound pics?). And if the baby was a boy and the doctor knew, could the doctor have put the baby at risk of a head bleed by having a natural birth (the article did not say if the baby was born naturally or by C-Section)? If all this is true, maybe there was true medical negligence and what is being sought is not so much emotional damage (obviously they are not so damaged they cannot be good parents to Jess) but a punitive measure against the medical facility that failed them in so many ways. In this manner, the lawyer has to follow whatever strategy works to get that justice.

Tough case to judge. I hope the parents at heart are grateful for Jess. Knowing how fiercely almost all parents of children with hemophilia I have met love and protect their children, it is painful to read about the burdens they say this child is causing them --even if it is only said for the benefit of the courts to seek justice for all. It will be interesting to hear more of the facts come out and hear from the hemophilia families in Australia comment on this case. Thoughts, anyone?

Book I Just Read
The Alchemist by Paulo Coelho. I generally like Coelho who has a lovely, simple style of writing but usually manages to capture fundamental themes on life and the human character. Here, Santiago, a shepherd, leaves his life behind to follow his destiny after a dream about searching for a treasure at the Egyptian pyramids. He meets assorted people along the way who help him rethink his journey and ultimately his destiny. This book is a quick read, enjoyable, easy to understand. I don't think it is Coelhos's best by a long shot. It's a bit too simple, though I enjoyed it because it was about traveling, far way places and above all following your destiny. I thought the ending was a disappointment--too much like a neat Hollywood ending. The book has met with mixed reviews. If you are spiritual, seeking or just like light tales with thought-provoking questions, you may enjoy this. Two out of four stars.

6 comments :

blood4 said...

In practice I have seen so many kind of scales of social and family values!!Like you very well explained it is a complex situation and we don't have all the details BUT
I can't see anything wrong in that case that justifies such exposure, (midia, critics, etc)fot their child and family.
the problem is that people in developed countries think that Science, technology can avoid surprises, mistakes....that they can CONTROL everything! and this is the striking news for these parents of a modern country....

I hope the child is safe, emotionally I mean, in the years to come..there is (we cannot deny) I rejection of this child because of his condition...if they put it in the way that they 'll have to ENDURE things as parents and need money for that.we all have to endure things and I have heard a lot of parents talking about problems with their families and children like in a family which doesn't have hemophilia.

I could debate hours...
I read Brida of Coelho..beautiful: it is about a young woman initiation in love, life...
hugs,
frederica

Patrick Brogan said...

This story is a few days old and it's taken a while for me to react because the emotions keep changing. Disbelief, anger, sorrow. The immediate response was here is another example of the notion so pervasive today that life should be painless and free of sorrow and disappointment and if life is otherwise then it’s someone else’s fault and they should pay.

Life is. It’s up and down, in and out, good, bad, sad, boring, exciting and everything else. It is both joyful and painful. It never goes in a straight line and no matter how well you plan and prepare the unexpected will happen. For good or otherwise. There are no guarantees.

We who have children with bleeding disorders know this all too well. Our dreams, hopes and aspirations for our perfect children were shaken to the core with the diagnosis of hemophilia or von Willebrand’s. For most of us; time, education and the support of others in the bleeding disorders community was all that was needed for those previously crumbled dreams to be rebuilt. Rebuilt and perhaps standing stronger having been tempered by the lesson that fate is fickle and dreams need not be discarded but rather reshaped and refocused.

It’s a lesson that this couple in Australia has obviously not learned or are unwilling to learn. Opting rather to wallow in victimhood and self-pity (or even more disgraceful – playing the victim card for purely monetary motives).

Laurie Kelley is right to point out that our only knowledge of the case, its facts and the litigants comes from these stories. The Melbourne Sunday Herald Sun had, I believe, the full original story. And from it I’m willing to make some inferences.

I’m no lawyer but this couple doesn't appear to be suing for ‘breach of contract’. Meaning: they were not given a 100% guarantee of having a girl. This is supported in the Herald Sun story:


"They [Lawyers for Melbourne IVF] claim the couple was given and signed an IVF consent form and a embryo biopsy consent form which stated: "If a pregnancy is achieved from biopsied embryos, we understand that further diagnostic tests are recommended to confirm the early embryo diagnosis."

"The plaintiffs knew . . . that undergoing IVF and PGD did not guarantee a female fetus if a pregnancy were to occur and could result in the sort of injury, loss and damage about which the plaintiffs complain," court documents say.

"The plaintiffs agreed to undergo IVF and PGD with the full appreciation of the nature and extent of the risks involved."



And is it possible that tests and ultrasounds were inconclusive as to the gender of the baby? Sure. How many stories have we heard of people expecting a baby of one sex because of an ultrasound only to be blessed with a child of the opposite sex? Also, given the nature of the IVF selection in this case the baby’s sex was perhaps taken for granted, by everyone.

It’s a sad case on so many levels.


“And they are claiming money to cover medical expenses, because Jess will need treatment and care for life.”

Did they count on psychiatric help after Jess starts wondering why “Mum and Dad didn’t want a boy like me. So much they considered killing me before I was born.”


“The couple say that, had they known [the baby was a boy], they would have considered terminating the pregnancy.”

Of course I find the above quote entirely repugnant. It recalls an excerpt I read from Practical Ethics a book by Pete Singer, a so-called bioethicist from Princeton University.


“When the death of a disabled infant will lead to the birth of another infant with better prospects of a happy life, the total account of happiness will be greater if the disabled infant is killed. The loss of happy life for the first infant is outweighed by the gain of a happier life for the second. Therefore if killing the haemophiliac infant has no adverse impact on others, it would…be right to kill him.”

Infuriating and sad. Mostly sad.

It’s not the fact that this couple went to extraordinary lengths to have a hemophilia-free child, Allison and I had similar discussions before choosing to have another child and leave it up to God. But by pursuing this litigation this couple is demonstrating a clear resentment and disdain for the life of their son Jess. A life and condition shared by my son.

Like all children our boys with hemophilia are gifts. Gifts to be cherished and nurtured and loved. Each one with unique talents and abilities, needs and wants. They are undeniable gifts and constant sources of joy.

Jess is three now. And I hope his parents know, and he knows, that he is a gift and a joy.

Patrick Brogan

I blog at http://redbleed.blogspot.com/

Ziva said...

I once spoke to a mother who'd done PGD and found herself pregnant with a boy who has hemophilia. I was surprised by her fear about the possibility of a child with a bleeding disorder, and I was surprised by the lengths she'd gone to to avoid one (her son is, by the way, now a happy, healthy and factor-using toddler).

I can understand a carrier choosing PGD, though I would not choose it myself. And I can understand feeling betrayed if the PGD didn't produce the outcome that I wanted. But.

Australia has a socialized medical system, with excellent care. Recombinant factor products are the medical standard, and prophylaxis is available. This family would pay insurance costs no higher than any other Aussie family, and Melbourne has excellent hematologists. I should know, we've used them!

So what, exactly, is the suit for? Ire?

While I understand wanting PGD, and I understand being terribly afraid of what a bleeding disorder brings, I don't understand a parent who looks at a child, three years later, and then chooses to sue. Three years later, they'd understand a bit more about hemophilia, had a chance to connect with Victoria's Haemophilia Foundation, and sort through a sense of what the new 'normal' means.

The only thing that makes sense to me is genuine malpractice.

Dr. Carol Kasper said...

According to my colleagues who do IVF and pre-implantation diagnosis, the major reason for birth of an affected child, after implantation of a supposedly un-affected embryo, is that the couple had natural unprotected intercourse soon after the IVF and PGD. After all, we're not dealing with infertility in these couples having PGD because of a genetic disorder. I don't know whether that's what happened in this case, of course.
... Carol K. Kasper, M.D.

Jack's Dad said...

This topic is fraught with emotional landmines. I believe that what strikes me the most is how hard this couple attempted to stack the deck to make their parenthood "convenient". They knew that the potential Mother was a carrier and that they had at least a 50% chance of having a child with hemophilia, so they opted to try and avoid the son. Obviously, the Almighty had other plans.

To me, a child, any child is a blessing and challenge laid on parents by God. I also firmly believe that He never, ever, gives one more than can be handled. Being the Father of a son with Hemophilia has forced me to be a better parent than I might have otherwise been. It makes one appreciate the sanctity of life and how much worse things could be. It also is a wonderful gift. Working with my son and other boys in a couple of the Hemophilia Association Summer Camps showed me how profoundly different they are! They are forced to mature earlier and take on responsibilities that their "normal" peers do not.

There are too many parents who want "trophy" children. Kids to be trotted out to show off, to be props for their parents, and then put back on the shelves until the next "Grownup Show and Tell". The number of children diagnosed with AHD/ADD, medicated and "controlled".

I may be harsh, but these parents sound like they wanted the prestige and perks of parenthood, but on their terms and for their convenience. Children are to be loved and cherished, not for how they make you look, but for the future, after we are long gone. I suppose a malpractice suit might be considered appropriate, but the apparent intent into which they entered "parenthood", doesn't make me sympathetic.

I wouldn't trade my son with Hemophilia for any other child!

Anonymous said...

The problem with playing God is, that we are not God.

 
Bayer