November 6, 2010

RESOLVE of New England Annual Conference Live Blog!

I'm blogging live today from the RESOLVE of New England Annual Conference in Marlborough, MA. Stay tuned for updates throughout the day - make sure to hit F5/Refresh! Newest updates at the top of this post.

5:15pm - Alrighty, we're out. Full recap post tomorrow. Thanks for following along for this live blog!

5:08pm - Wow. What a day. Just waiting for Larry to come back with his Room Monitor Sheet from the For Men Only Ask the Expert Session.

4:27pm - Helping to tally up the Room Monitor sheets... so far, the morning sessions were really well attended! Great to see folks dropping off evals on their way out, but I hope folks are heading to the Ask the Experts sessions! It's nice to sit at the main table and answer questions for folks. Also? If I haven't mentioned this already? Everyone is super friendly- presenters, exhibitors, volunteers, and attendees. A very safe space indeed for folks at every stage of their journey. Hm, probably should have mentioned that at the beginning of the day :)

4:00pm - Talking about known donors: there's not a lot written about it right now, and that's an indicator of how well they work. All in all, this is a really great session. Have to scoot... I'm working as the Room Monitor Captain for the Ask the Experts Panels at 4:20pm!

3:53pm - Amazing analogy that cracked up the group re: explaining conception to young children -  Conception equals three ingredients: ovum, sperm, uterus. PB&J sandwiches equals three ingredients: PB, J, and bread. If you're out of PB, you don't replace it with mustard because it's the same color. So, kids as young as 4 and 5 can begin to understand the basics of using donor gametes in their conception. Fair enough. Now I want a PB&J sandwich.

3:50pm - Nancy raises an excellent point about revealing donor gamete status. We must ask ourselves: "This is my child's information. If I share this information with others, will it help or hurt my child?" Ultimately, it all comes back to your child.

3:48pm - Members of the audience agree: sharing your stories with others is a good thing. The panelists talk about creating A and B teams - who are the people who can truly support you, and you might find that one person can shift from A to B, based on life circumstances. Your best girlfriend who is your strongest A team member becomes pregnant, and now you can't relate on the same way. She moves to the B team, but she's still your support, just in a more removed way. It's nice to hear other people share that when they've opened up to others they've gotten a flood of support.

3:41pm - Best statement of the conference, from the male panelist: "There's a lot of ways you can cope, but the one thing you learn through these opportunities is, you are not alone." Good lord is that true. That folks, is why I'm blogging and advocating and volunteering. We are not alone.

3:34pm - Lynn: The whole process feels very overwhelming at the start and you're just freshmen now, but you'll be sophomores soon. It'll all make sense soon. The first panelist makes a great counterpoint: it's okay if you're not able to get to that stage, or not able to be comfortable about going to that next step. Refreshing viewpoint!

3:28pm - Nancy: "Parenting is really flying by the seat of your pants." Totally rings of Melissa's keynote speech from this morning about "Just wing it."

3:22pm - Amazing statement from the previous panelist's husband: after 2 failed IVFs, they looked at their doctor and asked, "Why should we do this?" Their doctor's response: "Because one of those eggs could be your baby." And one of those eggs became their daughter. He also spoke beautifully about how much he wanted to see his wife pregnant, to spoon in the middle of the night, feel that big round belly and feel the baby move. "There's nothing like that in the world." First of all, totally never expected to hear this from a guy, so well said. Secondly - wow. Just... wow. It's so relieving to hear someone else express the desire to be a part of that pregnancy experience, as either mother or father. Just beautiful and really moving - lots of sniffles behind me in the audience.

3:13pm - Another panelist shares the very painful recollection of when her RE told her that she was not a candidate for IVF because of her age, despite being otherwise healthy. "It was a long process to try to work through that." She discusses weighing adoption vs. egg donation and went through the loss. Ultimately, the decision for egg donor won because experiencing the pregnancy was important to she and her husband, as well as having control over the health of the child as opposed to the lack of control over maternal health via adoption. Man, this is really stirring up some emotions for me. I hate the idea of feeling selfish for wanting to experience pregnancy.

3:08pm - Awesome comment from one of the parent panelists: when she was telling her 11 year old son that she was speaking at the conference today about donor egg and donor sperm, he told her: "You should bring me in as an example, mom!"

3:05pm - Nancy Docktor and Lynn Nichols, both consultants (private practice and BostonIVF respectively) open things up with our panel of parents who have been through donor gametes.

2:59pm - Waiting for Donor Egg & Donor Sperm: Asking the Tough Questions to begin. Interestingly enough, after talking with Larry today... if we had the chance to conceive with my eggs, we'd go for it. This opens up an interesting can of worms for later, but I'll get into that in a separate post.

2:02pm - Taking a break from the sessions to check out the exhibitors. Lots of candy to give away, as well as neat swag (props to Harvard Vanguard for the pillbox keychain!) and of course, tons of great information. Also great to see Joanne from Circle+Bloom. And I had a wonderful conversation with Davina - apparently she LOVES her doc... who just happens to be the person I'm seeing next week for my second opinion. Very comforting to talk with her about her experience, as I'm nervous about the possibilities.

1:07pm - So... I just got a Volunteer Award. Um, seriously not expecting this and TOTALLY flattered and humbled. Thanks RNE ladies! Y'all rock! (And props to Lee Collins, Terri Davidson, Amy Demma, and Sandy O'Keefe for their Volunteer Awards as well!)

12:57pm - RNE Board Member and Advocacy Director Davina Fankhauser is giving out RNE's Advocacy Awards to our corporate sponsors who helped to get the Infertility Mandate updated in MA. Recipients (in alpha order): BostonIVF, Brigham & Women's, Mass General Hospital, Reproductive Science Center (and specifically Dr. Samuel Peng), and Village Pharmacy. Davina has also announced a celebration of Family Building legislation at the MA State House on Wednesday, Dec. 15th from 2-3pm.

12:15pm - Really informative session. Learned a lot about the legality and the ways in which embryo donation programs vary throughout the country. Now, time for lunch! My tummy is a rumblin'.

11:58am - Susan: Virtually all states have statutes regarding sperm donation: children created through donor sperm are the children of the recipient couple. 9 states have statutes expanding this to include both egg and embryo donation. Sadly, MA is not one of these states. Only GA and FL have laws with specific terminology regarding embryo adoption. She recommends a "belt and suspenders" approach just to make sure that your family is protected by the law, and that means approaching a judge in those 41 other states and going through the procedure to adopt your own child. An almost absurd approach, but it's the safest and broadest protection to the legality of your family and ultimately, it's a bunch of paperwork more than it is from the traditional adoption approach.

11:49am - Amy: While it's legally complex, the legality should not be a deterrent if embryo donation is the right path to family building for you. Susan: Even with known donors, get a contract. Sometimes this can even be a screening tool if someone you know isn't willing to do a contract, this might send out a red flag for the eventual legality of your future family.

11:45am - Susan: Many couples who do IVF are willing to check off the "donate my leftover embryos" prior to achieving parenthood but often change their mind after the fact when they realize that there is the potential for their children to have genetically-related siblings out there in the world. A great discussion going on about consent.

11:40am - An overview of the process: 1) Find embryos. 2) Get them screened (look up IVF records, have donors and recipients screened). 3) Homestudy - are you suitable recipients per the standards of the donation agency? And those standards vary greatly across the map. 4) Medical protocol for the transfer itself. From a mental health professional in the audience: how much does the recipient family get to know about the donor? It varies from program to program. All of the donations that Amy has been a part of have been known. The point is raised that the mental health issues that face adoptive parents are nearly the same for embryo donation recipients.

11:33am - To the African-American woman earlier: don't be discouraged as there ARE options- there are donors and embryos to be found, but just requires some digging. Amy has some great resources to refer to her.

11:28am - Just learned about PGD (Pre-implantation genetic diagnosis). Mind. BLOWN. You can take 1 cell from an 8-cell embryo and run it through hundreds of genetic tests and then you can STILL grow a healthy embryo from the remaining 7 cells. WHUT.

11:25am - Interesting screening issue: donor couple needs to be screened, but if the embryo was conceived using donor gametes, then those donors need to be screened. This of course, varies by clinic, but an important point to consider.

11:21am - "The first place you should start looking for embryo donation programs is with your own clinic." - Amy Demma. The list she started with just two years ago has grown extensively. A large portion of programs have been faith-based, but they have been expanding, as Amy's noted in a really fantastic handout packet.

11:13am - Important distinction: embryo donation is the proper term as legally, embryo "adoption" means that you don't have legal ownership of the child you've carried for 9 months until 4 days after its born (in MA, at least). A small distinction, but a legally important one. Terminology, as I've been learning in our IF journey, is vitally important. Other key definition: embryo donation is a frozen egg that has been fertilized. From a personal perspective, it's where adoption and donor egg/sperm meet. Neat.

11:07am - Survey of the room: some MA couples, 2 folks from NY, and 1 couple from NH. Important to know since laws vary from state to state. Speakers are lawyers Susan Cocklin and Amy Demma, both area lawyers specializing in infertility law.

10:57am - Waiting for the Embryo Donation session to start. Looking forward to getting some more information about a subject about which I don't really have much knowledge. Interesting side-conversation overhead: an African-American woman expresses concerns that her clinic does have embryo donation, but no African-American embryos. A point I would have never considered; even though I'm half-Japanese, I have the luxury of being able to "pass" as "white." That's why ladies like Broken Brown Egg are a vital voice in this community: the African-American perspective on infertility is often forgotten about. Whoa, got off topic here. More updates soon with the latest info re: embryo donation.

10:34am - See! I met Melissa. Here's photographic evidence :) Also, what a great conversation - everything from blogging and book writing to "the ribbon cross lady on the plane." Oh, I do hope she blogs about her b/c that was a hysterical story. Time to head off to the volunteer table - first volunteer assignment of the day coming up: being room monitor for the Embryo Donation session.

10:04am - Chatting with Melissa Ford. She is one cool lady! Discussing the virtues of self-hosting my blog.

9:07am - My husband just called me the "Infertility Engadget" with this liveblog. I'm touched and flattered. Also, the conference Twitter hashtag is #RNE10.

9:04am - Q: Is there a clearinghouse of correct information? A: Go with your gut. Case in point? The multiple times Melissa has received advice to rub yam cream on herself. Yam cream?! Wow. She also addresses the Robutussin lore: may not be scientifically backed up, but we hear about it everywhere. Ultimately? Take it back to your doctor.

8:59am - Exciting! We're opening up for question & answers. Q: Are their blogs for men? Sure ARE! (Looking for them? You can check out some of them here under "The Elusive Male Point of View."). Oh, PS? We need more male voices out there.

Q: "Can you blog anonymously?" A: Absolutely - and if you do choose to reveal your identity, great advice - don't name your doctor, don't name your clinic. (Note to self: I'm going to go back and delete some stuff.) Referencing the Justin Long fiasco. You can also "come out" on your own terms, and when you're ready.

8:54am - "Go online and find your virtual tribe." Great point about the ways in which we seek support. "Go home and start a blog." Wow, so true - that's exactly how I got started, and I know so many of you did too! Shoutout for the ALI Blogroll. "And while support won't cure infertility, it will give you refuge."

8:53am - "The only way out of infertility is through infertility."

8:52am - Best advice for life, received from her dear friend Carla when Melissa forgot the notes to her first book reading: "Just wing it." Life doesn't always go according to plan, and that pausing from life isn't an option. Don't stop living - we can't let infertility take away from living our lives. "Just wing it" is the anti-"just relax."

8:48am - "When the losses are that small that they can be hidden, what right do I have to mourn deeply?" Melissa reflects about the loss of Politics and Prose owner, Carla Cohen and ties it back to the journey of infertility. How do you share a silent experience with others?

8:45am - "Infertility: the news never comes at a good time." Um, truth sister. Sing it, Melissa!

8:41am - Lots of conference raffles... exciting! Also, here comes keynote speaker, Melissa Ford!

8:32am - Been here for a few minutes now, finally connected to the hotel WiFi AND I just met the Stirrup Queen herself, Melissa Ford! Exciting. Also, as far as I've heard - we're officially over the number of pre-registered attendees from last year... final numbers at the end of the day once we figure in walk-in attendees. Considering purchasing a 2nd copy of her book for her to sign since we still haven't unpacked our (21) boxes of books yet. Oops. Ahah, here come Rebecca Lubens, Executive Director of RESOLVE of New England and Melissa Ford... and here we go!

6:46am - And we're off! On the road to the Conference. Hope to arrive just past 8am.

1 comment:

Kristin said...

Oh that sounds like a truly amazing conference.