Well, my last few posts have generated quite a bit of empassioned feedback from “infertility consultants” defending the need for “professional educators” to fill the void they feel left by clinical teams, attorneys, mental health providers etal in giving patients/clients a solid understanding of alternative family building options and issues.
I returned yesterday from the RESOLVE of the Bay State Annual conference where approximately 200 folks participated, through-out the day, in 40 educational events and had the great fortune of a key-note speech by Ali Domar. I attend, exhibit at and in most years present, every year, at this always successful conference. This year, as a result of RESOLVE again receiving a Federal Grant on Embryo Donation, attendees were offered 3 Embryo Donation sessions and then a Embryo Donor Focus group in which to participate. Admission to yesterday’s event was nominal. Several weeks ago the AFA held a similar event for those in the NY Metropolitan area. Both Resolve and the AFA hold regular 3rd party repro educational events through-out the year, admission is usually around $10.00
I know that here in Boston, Reproductive Science Center as well as Boston IVF hold weekend “educational seminars” on third-party reproduction. I imagine that Mass General, the Brigham and other fertility centers in New England do the same. Is it a regional thing??? Is my view narrow and limited? Are we more committed to education than coulleagues in other parts of the country??
I offer every prospective client a one-hour gratis consultation (prior to and regardless of matching/cycling through our office) and take them through all of the steps of the practical aspects of collaborative reproduction. I certainly hope none of my clients feel the need to engage a third-party service provided for “education”….I would not be provding the level of service I intend if that were the case.
So, I am asking my medical and legal colleagues, nationwide, for their perspective….The contention is that physicians, nurses and other members of clinical donor egg teams, including mental health providers, are either not qualified or not committed to offering “education” on infertility treatment options. I am asking patients and donors, too, who read my blog…..do you feel there is a void in the depth and quality of education that you are or have received from my office, my colleagues, the clinics in which you’ve chosen to cycle, the mental health providers you may have seen? ……
………….and then there is the issue of licensure!!!
As a patient and now a mother via egg donation it was my experience, )and it still continues to my experience) that many of the parents and parents to be are being informed by their physicians of their condition, told to go the donor egg route, and sent out the door. Sometimes they are given a handout, but the patient is often left floundering.
It took me seeing three care providers before I found the one who took the time to sit down and have an actual conversation with me about what was wrong with my body, what diminished ovarian reserve was, what premature ovarian failure was, and finally why my FSH levels were higher than what they were supposed to be, and finally what egg donation was, and how I could become a parent that way.
I think part of the problem is lack of time. I heard that a lot from recipient parents — “My doctor doesn’t have time, he’s in and out within 5 minutes, and I don’t ever have the opportunity have my questions answered.
And then Amy, there’s some things I hear that cause me to shake my head — “We don’t do injection teaching here at this clinic, we figure everyone is pretty Internet savvy, and you can learn how to inject yourself on the Internet.”
Is that crazy or what?
My own personal experience with the mental health provider who sat down with my partner and I to talk about egg donation, screen us and approve us for our cycle was very odd. I expected her to ask us something about me losing my genetic link, and how I felt about that. Or even how did my husband feel about creating a child with a donor egg, knowing my genetics wouldn’t be in the mix. Instead we were asked how we were holding up under fertility treatment. Did we ever talk about a divorce. And did we make sure to resolve our issues before we went to bed, and to make sure when our children were born not to fight in front of them. She took our 250.00 dollars and thanked us, signed our paper and sent us on our way.
Now I am not saying every doctor, nurse, lawyer, or mental health provider is going to behave like the examples above. However, when I receive email after email from frustrated patients AND egg donors apologizing for asking questions they should be asking their clinic and can’t get straight answers from it’s kind of scary.
I will say for every 100 emails I receive from frustrated recipient parents regarding the lack of care they receive I might get one or two emails in that bunch from a parents who’s grumbling about paying 600 - 1000 dollars for a donor egg contract that to them looks like it was from a cookie cutter.
And I stick up for you folks, because when I ask these parents if *all* of their questions were answered in regards to the legalities of all of this I *always* hear YES and then some. And so I tell them they are paying for YOUR time, which is valuable, and then they get it.
The other part to this is it’s an imbalance of power I think. When we see an infertility specialist our lives are in their hands. We pay them money to help us achieve what we so desperately want and desire, and if they told us to stand on our heads and sing the Star Spangled Banner if we thought it would help us have a baby we’d do it and pay several thousand dollars in the process.
Education is very important! I do it with each person that contacts me whether a client or not - we just need to make certain that the education that is provided out there is inforamation, not misinformation. Why are others not doing it, who know? But, I too would like to know - why not?
Thanks, Theresa and Marna…I, too, am just flabergasted that both donors and recipients could possibly be cycling or are scheduled to cycle, uninformed, despite being represented by counsel, facilitated by agencies and registered with good medical practices. I am hoping both attnys and those from the medical/psych practices will offer commentary on this issue. Are clinics really sending donors out the door w. hyperdermics and/or other meds w/out education? Are MHPs really short-shrifting those in their care? (I am so very impressed with the dedication and commitment of the members of the ASRM MHPG and remain active on their listserv, I hold those members in the highest esteem…who are these medical/legal/psychosocial practitioners that these infertility consultants find in such large numbers?)
I find this to be just shocking and obviously, worrisome.