Monday, February 05, 2007

An eggstra special conviction

In an entry that I wrote back in September 2005, I briefly described the long, painful journey we took in order to bring our son into the world. I won't rehash it all now, but I will tell you that one of the paths we chose involved three failed rounds of egg donation treatment. Legislation in Israel regarding egg donation is changing, and to be honest, I'm not sure where things stand these days. When we elected to go down that road several years ago, however, the laws stated that only women who were undergoing fertility treatment could donate eggs. There were no donor banks like those that exist for sperm donation, and women who were not undergoing fertility treatment themselves could not volunteer to donate eggs. As a result of these policies, there was a shortage of donated eggs. Understandably, many women undergoing treatment found it difficult to give up something that had taken so much to obtain, and I didn't blame them for wanting to do the maximum ensure success, for not wanting to sacrifice the few chances they had.

There were other issues as well. I wondered about the quality of the eggs being donated, given that they were coming from women who were themselves having trouble conceiving, a problem that can stem from a multitude of factors, whether they be age-related, genetic, or simply a question of the woman's ability to produce good-quality ova. I also wondered how donors and recipients were matched, as I naively wanted a donor who had similar physical features to ours. We continued to make the rounds of various specialists to discuss our options, and while I don't remember much of what was said, the one thing I do remember is that the waiting list for receiving donated eggs was very long, and it could take more than a year until we reached the top of the list.

And then in 2000, the scandal broke. A senior gynecologist and fertility specialist was accused of giving several of his patients who were undergoing fertility treatment dangerously high doses of hormones so that they would produce very large amounts of eggs. Each of the women had previously agreed to donate some of their eggs, and the doctor was accused of harvesting the eggs in order to sell them to other infertile women. Needless to say, the (already low) number of women who were prepared to donate eggs plummeted, while demand for such eggs did not. Many Israeli fertility clinics halted egg donation procedures in the wake of the scandal, and any remaining thoughts we had of having the procedure performed in Israel via our health maintenance fund disappeared. There were almost no eggs available, nor would there be any available in the foreseeable future. This one doctor and his cohorts had single-handedly destroyed the egg donation option in Israel. Women had previously considered donating their eggs were no longer interested, terrified by the knowledge that an unscrupulous doctor had endangered the health and the lives of his patients undergoing the same procedure.

We went through two egg donation cycles abroad – one in London and one in Madrid. We considered cycling in the US, but the costs and the logistics were prohibitive, and we discovered that we could work with top-rated European clinics for much less than the cost of average US clinics. Each treatment cycle required two trips to Europe, not to mention the incredible amount of work that was necessary to coordinate schedules, reproductive cycles, flights (including one flight to Madrid on three days' notice) and accommodations. Research of the various medications was also required, in order to ensure that I would be able to purchase in Israel the drugs that were being prescribed in Europe. Time off had to be arranged from work – sometimes on very short notice.

And in the end, both cycles failed. We managed to do a third cycle in Israel that involved sending sperm to Romania to fertilize eggs provided by an anonymous Romanian donor, then having the fertilized eggs frozen and flown back to Israel for transfer. While legal, it was still rather murky, and involved quite a bit of hassle with our HMO, as we would have to pay out of our own pockets, but they might be willing to reimburse for part of the amount. The Romanian option came as a solution for women who for one reason or another could not seek out private treatment abroad as we had done. There were several similar options involving Romania, Poland, and Greece (and probably other countries where legislation is vague and treatment is inexpensive), and many of them involved some level of partnership and cooperation between fertility specialists in Israel and the foreign clinics. Some involved one or both partners flying abroad, others involved only the transfer of frozen sperm and fertilized ova between the two countries (as we had done). An entire industry was cropping up to fill the great hole that was created primarily as a result of the scandal in 2000.

I believe that Israeli legislation is being changed in order to allow any woman to donate eggs. Passing such a law would be a positive step that will allow great numbers of Israeli women to pursue dreams of creating a family, filling a painful void that cannot possibly be fully understood by someone who has never been in that situation. In the meantime, I felt great satisfaction this morning when I read this article. Seven years after the scandal first broke, Dr. Zion Ben-Raphael has been convicted by a Health Ministry disciplinary panel of "conduct unbecoming a doctor and violating patients rights laws", and will hopefully be appropriately punished for his actions. I'm not sure what punishment would be considered sufficient in light of all the damage he caused – damage to the credibility of an entire industry, and damage to the hopes of thousands of Israeli women in need of donor eggs, but punishment for the guilty parties coupled with an increased level of public awareness and changes to existing legislation will hopefully create an environment where the obstacles along the often painful journey to parenthood can be minimized as much as possible, no matter what kind of treatment is needed in order to complete the journey.

12 comments:

lisoosh said...

What a detailed and personal story, and what frightening and uncertain procedures - mailed eggs from Romania?
I can't believe they only used donated eggs from people who were already having trouble conceiving, in all probability adding to the problem as yes, there could be all sorts of issues with age and poor quality.
As I am sure you know, here in the US they pay thousands of dollars for egg donations with many college students doing it. I'm not sure that I could ever have, I don't really like the thought of some little half-mini-me walking around somewhere out of my supervision and knowledge.
An interesting story.

Beth said...

Would you mind sending me the info on the European clinics? A friend here is devastated by our prohibitions as well. I'd love to get her some first hand information!

My Marrakech said...

What an incredible story! And how much you have gone through in an effort to have your son. He must be so loved and treasured:-)

Jessica said...

Thanks for adding the personal side to this story - it makes the point stick

Liza said...

Lisoosh: The phrase "you do what you have to" sounds kind of casual, but it's true. We weren't prepared (nor able) to keep flying to Europe, and this option - not exactly mailed, but probably flown via courier was the easiest one for us to do, and one that we could do multiple times if necessary.

The US egg donation industry is frightening, to say the least, but it does have advantages that many of the clinics in Europe do not, as a result of local legislation or lack thereof.

As far as being a donor, it is an incredibly personal decision, in my opinion. Do you think you might feel differently if the recipient was your sister/relative/close friend?

As a recipient, I know that my donor "requirements" changed as I became more comfortable with the procedure and as we kept trying. My need to be in control of all aspects diminished with each try.

My Marrakech: Thank you. I wouldn't wish our journey on anyone, but as a result of what I've been through, I do whatever I can to help others in similar situations.

He is definitely loved and treasured, even on the days when I want to put him up for adoption before he destroys any remaining shreds of sanity still lingering inside my head...

Jessica: Without the personal stuff, it's just another local news story. It resonated with me precisely because of the personal connection, because I've been following the story since it broke seven years ago and it had a direct impact on my life.

nrg said...

Being a donor is a decision that takes a lot of consideration.
I thought of it as a priveledge when Liza accepted my offer (made the day before the birth of my first child) to be an egg donor for she and hubby. It was a long road to travel, with the positive benefit of meeting up twice in London.

I never really thought of the possibility of a mini-me out there somewhere. The child that could have been, but was not successfully created would have had half of my genetic make up but would have been nurtured inside of Liza's womb. Everything after that egg, that one little cell, would have been provided by her, not me. I just thought of it as a gift of something that I wasn't going to use and she desperately needed. It would have been better if I could have given the gift without all of the self-injected drugs ;-)...but I would have made the same decision again in a heartbeat. I think the idea of donation was easier because it was for such a dear friend.

lisoosh said...

Liza -
Yes, I probably would feel differently if the recipient was my sister or another relative or close friend (although some relatives would get an egg from me over my dead body only). On the other hand, knowing myself, I would feel some sense of proprietry over the resulting child and that is not a healthy or good thing. Of course for women, the process is internal so there seems to be a much more primal connection to our DNA carriers than there is for men (spilling of seed and all that). It never ceases to amaze me how men can just donate sperm without another thought.

This is all academic now as I have begun that slippery slope of age which means that my eggs are no longer desirable to others anyway.

tafka PP said...

Wow. Thank you for sharing this incredible story with us. I know that the issues are difficult here, but let's hope that the legislation passes quickly and eases the struggle for so many potential parents.

lisoosh said...

nrg - what an incredible gift to offer.

RR said...

Liza, I can only repeat what others have said- thank you for sharing such a personal story, and I am so glad that at the end you got your little guy (btw, I don't think there's anything strange about wanting a donor with features similar to your own). Well worth all the trouble and heartache, I'm sure!

I remember when the egg-donation scandal broke. How horrible. I really don't know what punishment would be suitable for this quack- let's hope it's severe. And I certainly hope that the laws are changed so that more women are allowed to donate eggs, so that couples trying to conceive don't have to have to go thru the wringer trying to obtain eggs.

Anonymous said...

Liza, do you feel that the 2.5 years that Dr. Ben-Raphael will lose his medical license is sufficient punishment for his actions?

Liza said...

Anonymous: Sorry I haven't responded until now. I wanted to think about it for a bit.

Ben-Raphael knowingly endangered women's lives and decided that he had a right to play God. Not only were his actions arrogant and dangerous, but they also had far-reaching implications in the ART (Assisted Reproductive Technology) community with regard to the willingness of women to donate eggs in the future. He singlehandedly destroyed the egg donation industry in Israel, at least temporarily. If he was indeed trying to help other women by providing the donor eggs as he claims, he showed incredibly poor judgment.

I think the 2.5 years of having his license revoked is a good start. I think he should also have to pay restitution to the women he harmed, and perhaps be banned for life from dealing with the egg donation process in any way, shape or form.

Medical professionals must be held accountable for their actions, and sentences meted out for such actions should hopefully act as a deterrent to other medical professionals who purposely use their skills in a questionable manner.