Sunday, April 25, 2010

Clinic Directives

I just read about a woman who recently underwent a Frozen Embryo Transfer with donated embryos. At the time of transfer, she chose to thaw 5 embryos. Once they were thawed, she chose the best two, and discarded the other 3. She is now pregnant. To stay I'm stunned by and struggling with this is the understatement of the century. But this isn't about my feelings on this. And it's not about judgment on her, because I don't know her. I'm only grieved by her choices. It's about dispelling inaccuracies, myths, and lies. Nadya Suleman was the perfect example of a woman who felt backed into a corner because she was provided inaccurate and incomplete information. And I think that happens all too often, especially in the world of ARTs.

First, discarded is just a euphemism for killed. An embryo is a completely individual, completely unique, completely human, tiny little life. It contains all of the genetic material it will ever have, which means that from its creation, it was as much a human being as you or I. The only difference is size and degree of development. But, just like a newborn is different from a toddler who is different from a teenager, who is different than a twenty-something, who is different from a geriatric, but they are all still equally human, so is this little embryo. Her body still needs to grow, but every single cell of her being is human. Therefore, you cannot discard as though you can something inanimate. You can only kill.

She said that she discarded the other 3 because her clinic refuses to refreeze. I have a couple responses.

First: You are the patient. And YOU are the parent. YOU have the right to determine what happens to your babies and to you. Reproductive Technology is the only medical field I've ever encountered where the doctors expect patients to surrender a carte blanche. With our first clinic, the thaw/transfer contracts basically boiled down to "when in doubt, we (the clinic) make all the decisions and we'll do what we think is best."

But think about it. Would a dentist ever just tell you, "Open your mouth, and trust me. I'll let you know when I'm done?" Who knows if you'd end up with fillings or braces or no teeth at all? Would a Physical Therapist ever map out a plan of action without soliciting your input? How about a cardiologist? For Pete's sake, not even a hairdresser would do that! In every case, the caregiver would assess the situation, take exams if necessary, and then outline your options to you and the two of you would choose one together.

Do you want a gold filling or a silver one? Do you want a hip replacement or physical therapy? Do you want heart surgery or drug therapy? Do you want bangs or a bowl-cut? Why the reproductive field is any different, I don't know. (I realize that things are different when you're in a critical care situation with a comatose patient, but this is not that scenario). It doesn't have to be that way. No amount of authoritative language actually means they have any legal right over you to make those decisions (that's not to imply that they're behaving illegally, it's just to say that just because they say it's their right, doesn't mean it actually is). Sure, it's their right to do business as they please, but it's your right to take your business elsewhere if you're not satisfied.

DON'T sign paperwork you're not comfortable with. We spent DAYS editing our first transfer paperwork, to omit every single reference to and possible loophole for any kind of destruction of life, as well as any ambiguity about decision making. And then we met with the Embryologist to lay out our priorities just in case we'd missed anything in writing. And that was our right and our clinic respected it.

When we switched doctors, we again reviewed all contracts before our babies were ever touched, and were very clear with our directives from the get-go. At the end of the day, YOU make the choices for yourself and your children. Don't let a clinic bully you into making decisions you're not comfortable with. Know, in advance, their policies and procedures for every possible scenario: When are the embryos being thawed? Who decides how many to thaw? What happens if every embryo you thaw survives? What happens if only some that are thawed survive? What happens to those who look "stalled" or "arrested" or "weak" or "slow?" WHO makes those decisions-the doctor or the patient? Do they decide according to "viability" or according to "dead or not dead." ("Viable" in this case is a gray area that means the embryo is technically alive, but the Embryologist will decide what chances it has for survival).

Read your contracts very very carefully. Get to know the heart of your doctor. Is their goal to "get you pregnant" or to honor your wishes, including if it means treating each life as a precious individual? We've been blessed that in both our cases, while our doctors disagree with us on the value and the life of the embryo, they operated according to our beliefs when dealing with our babies. Under any circumstances, do not go in to a thaw/transfer situation without knowing who has the ultimate decision making power in every scenario. Get to know what the nuances in the contract language mean. Be as specific as possible in your directives. On a side but related note, also make sure your clinic has instructions on what to do with your embryos in case you die. In most cases, the embryos would be destroyed unless you tell them differently in advance.

But, if after all that, your clinic doesn't want to let you alter your contract or make your own decisions, or if you just don't think they'll respect the treatment of those lives that you think they demand, get a new clinic! At the end of the day, they are a service-provider. You don't owe them your business or your loyalty, and in most regions of the country, there are several other choices who would love your business. You DO owe your children your protection.

If for some reason you're in a situation where there's only one pony show in town, or only one insurance-approved provider, or some other reason where you're forced to use this clinic/doctor and no one else, then make your decisions accordingly. If you know they won't refreeze, then don't thaw more embryos than you're willing to transfer.  Thawing only takes about half an hour. You can start out conservatively and if they die in the thaw, you can still thaw more before your transfer. I do know that doesn't allow for culturing over days with day 1-3 embies, but I'm of the belief the quicker they're in the natural womb, the better. God holds their lives-if they're going to live, they'll live and He doesn't need a couple extra days in a dish to accomplish that.

However, if you do believe in culturing, then only thaw the amount of embryos you'd be willing to carry in pregnancy if they all survived and implanted, and no more. If that means you end up canceling a cycle because all embryos died in the thaw and you don't have time to thaw more, well, so be it. If Embryo Adoption is how God intends to grow your family, He'll equip you with the means you need to go through as many transfers as it takes. Don't make life-or-death decisions according to economy and odds.

Embryo adoption cannot be about just getting you pregnant. There are now other people involved, so this can't be just about you. As soon as you take responsibility for those babies, your decisions have to be about them. These tiny lives have been entrusted to your care for nurture, shepherding, and protection. Considering Embryo Adoption only as a fertility treatment opens the door for all sorts of decisions that I don't think anyone would make if they considered these precious as they are: tiny little children. These babies need our protection and our advocacy. Their tiny little lives have already had an unconventional and dangerous start. Please be careful as you make your decisions about your future, and theirs. Seek the Lord to direct you with wisdom and discernment as you make decisions. Stand up for your rights, and for theirs. Educate yourself and know the information that could change or harm all your lives. Communicate with your doctors. Know what you don't know. And when in doubt, please err on the side of caution.

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