This blog post is a little bit outdated because the stories are now weeks or months old. I haven't blogged about either issue because they're both very upsetting. Every time I sit down to do it, I just can't bring myself to compose a really coherent post. But I am asked often about my thoughts on both and in fact, the question about my thoughts on Octomom is what led to the news interview.
The two issues at hand are that of the woman in California who gave birth to Octuplets after a Frozen Embryo Transfer with 6 embryos (2 of which split), and the decision by President Obama to rescind the ban on the federal funding of Embryonic Stem Cell Research.
The most frustrating part of the story about Ms. Suleman is that there were options other than the one she chose that put both her and her babies in danger. Ms. Suleman says that she transferred 6 embryos at once because her only choice was to do that or to destroy them. That's simply not true. First, if they were her embryos (legally), then no one had the power to do anything with them except her. So they were in no danger of destruction unless she herself chose to destroy them. A clinic cannot destroy embryos without the legal "owner's" consent.
Second, she could have still gone on to transfer all the frozen embryos, but there is no reason that she had to transfer 6 at one time. She could have transferred 1, 2 or 3 at a time, and left the others in frozen storage and then come back and transferred more a later time for future pregnancies. Frozen embryo storage is actually very reasonable in cost: $300-$500 per year--a small price to pay for increased safety for you and your children. There is just no reason she should have put herself and all the children at risk. A pregnancy of 8 is not healthy for anyone, as evidenced by the fact that she could not carry to term and the children were born in to NICU.
Third, if for whatever reason she couldn't have come back in the future for additional transfers, she could have placed her remaining embryos for adoption. There would have been no cost to her, and she could have determined what she wanted in terms of openness or closedness and in the characteristics of the receiving family. Of course it would have been a difficult decision, but it would not have resulted in the destruction of her embryos, which is what she said she feared and why she said she chose to do what she did.
It frustrates me that she made such a risky decision without all the facts about her options. Her doctor should have taken better measures to educate her about her choices. No one should be backed in to a corner and forced to make a decision sheerly out of lack of information.
We ourselves could have suffered a similar fate, because no one really told us that Embryo Adoption was one of our choices. By God's providence alone we went to college 6 miles from the agency that invented it and 10 years ago he tucked news snippets about this new thing called Embryo Adoption in our heads and hearts, and brought them to the forefront when it was time to reveal that plan to us, all these years later. But at no point did any doctor or fertility clinic offer that as one of our options, nor did many of the numerous books I sought out. This issue needs more exposure, period. Families on both sides of the coin need to be educated that this is one of their options. The amount of agencies and clinics that offer it needs to be expanded. Public awareness needs to be raised.
I'm also angry that her doctor would even agree to transfer that many embryos. It was hugely irresponsible. A pregnancy of that many babies isn't good for anyone-the mother, or the children, not to mention the children Ms. Suleman already had who were placed at risk of losing their mother to illness or death. Ms. Suleman said she would carry whatever embryos implanted and for the sake of the lives of the babies, I am grateful that she did not choose a selective abortion (aborting some of the babies to "make room" for the rest). The doctor absolutely should not have agreed to transfer more embryos than could be carried in a healthy pregnancy if all "took" (which they did in this case, and then some!)
I do commend Ms. Suleman for refusing the temptation to abort some of her children. Despite the bad decisions that created the situation to begin with, I am grateful that she chose life for all of her children. I am sure the decision had to be difficult especially because she was carrying 8, so I think that makes her decision that much more remarkable. Well done in this regard, Ms. Suleman.
But back to the doctors. Sheila (our Genetic Mom) and I were talking recently about our clinics and we've come to the conclusion that they hold an inordinate amount of power. Ms. Suleman should have been educated on all her choices. She made a very dangerous decision out of a position of ignorance, and I fault her clinic/doctor for that.
Beyond that, clinics need to assume more responsibility for educating their patients and take less power in the decision making process. In both Sheila and my contracts, the default language for embryo creation, transfer and destruction is "When in doubt, the clinic decides." Language is often vague and technical. Unless a client really pours over it and understands it backwards and forwards, and understands all of the nuances and implications, and exercises his or her right to alter the contract, he or she could be setting him or herself up to allow something he/she morally wouldn't, without even realizing it. I really believe contracts need to be written with the default power in the hands of the client or even with language "when in doubt, we'll stop and ask."
In no other medical situation would a patient just resign himself to "whatever the doctor decides." Sure, if you're on the table and a split second decision is the difference between life and death, the doctor is not going to wake you up to consult you. But in the majority of cases, embryo transfer protocol included, the majority of decisions and decisions about "what ifs" can be made well in advance, and along the way, with input from the patient. If you needed treatment for an ailment, a doctor would review all your different options with you and then you would explore them and make a decision together. There's no reason Embryo Transfer procedures shouldn't be the same.
So while I am frustrated that Ms. Suleman seems to be so glib about what could have been a fatal situation, I place the majority of blame with her doctor/clinic for failing to educate her that she had other life-affirming options.
The other issue assaulting embryos has been President Obama's decision to rescind the ban on federal funding of Embryonic Stem Cell Research. In ESCR, cells are harvested from days-old embryos, thus killing the embryos. Under the Bush administration, federal funds could be used to research on on colonies of cells that had already been established for research, but funding could not be used to create or expand new lines. To clarify a common misconception, Embryonic Stem Cell Research was never banned-it just could not be federally funded. It has persisted in the private sector for many years.
I can't even begin to describe to you the feeling that comes with being told that basically, were it up to the President, your children would be dead in some laboratory somewhere, having been put there against your wishes and using your own money to do so.
It is patently wicked for one person to kill another, and the government has now compounded its own wickedness (can there be degrees of wicked?) by not only allowing the killing, but funding the massacre. The amount of children who die in laboratories will now increase, and my tax dollars are helping that process, and there's not a damn (word not profane-this really is evil, from the pit of hell) thing I can do about it. It makes me ill. Shame on you, President Obama. May God have mercy on you, on us as a country, and on those precious babies.
Beyond the life issue however, Embryonic Stem Cell Research is also a colossal waste of money. It has existed for many years and has never produced a single cure or treatment for any disease. At any time, but especially during a recession, it is fiscally irresponsible to spend so much money on "research" that has no promise. If ESCR were all its cracked up to be, investors in the private sector would be clamoring for their piece of the pie and the ESCR researchers wouldn't have to begging at the door of the Federal Government for handouts. The lack of interest from the private sector is very revealing.
Meanwhile, Adult Stem Cell Research, Cord Blood Stem Cell Research and Pluripotent Stem Cell Research has all been exceptionally promising and none of these methods are fatal to the cell donors. Adult Stem Cell Research has already yielded treatments for dozens of diseases including Type-1 Diabetes, spinal cord injury and Parkinson's Disease. And in fact, in some cases, Embryonic Stem Cell Research has been damaging-even causing tumor growth and cell mutations in some test patients!
The President has forged ahead with his morally and fiscally irresponsible insistence on the pursuit of life-ending and financially wasteful Embryonic Stem Cell Research and the reasons for it are beyond my comprehension.
Moves like President Obama's are exactly why patients need to be educated about their choices (they can do more besides just donate their embryos to science!) and why families (both placing and adopting) need to know about adoption. Especially because the Government will not protect these precious preborn children, we must.