S.3142 and H.R. 5979 Stillbirth Awarenesss and Research Act

Today marks Pregnancy & Infant Loss Awareness Day. At 7 PM (your time), please light a candle in memory of those lost and in honor of those remembering. We'll light up the world.

There are no words that I can say that would be more graceful and eloquent than those written by Antigone.

With the presidential election and financial crisis eclipsing all else this fall, the Stillbirth Awareness and Research Act will likely go unaddressed for another year.

Another Year. For another year, thousands of parents will leave the hospital with a list of funeral homes, no living child to cradle, and an unanswered question. Why?

The why will continue to go unanswered and potential treatments left undiscovered for another year. They will go unanswered and undiscovered because current research and funding are insufficient. Until S.3142 and H.R. 5979, the congressional bills for The Stillbirth Awareness and Research Act are passed, the problem will remain unsolved.

My son's name was Henry. His heart stopped beating on January 17th, 2008. On October 15th, and every day of the year, I remember him and thousands of others.

Please write or email your members of Congress and ask them to pass S.3142 and H.R.5979, The Stillbirth Awareness and Research Act now.

Guest Post from John Dear

(Interpreted from utter incoherence and typed by Jendeis)

Hi, this is John Dear, Jendeis' husband. I have a question for those of you dealing with male-factor infertility.

As you know, I have ejaculatory inhibition which makes it very difficult to get samples for an SA. When I can get a sample, the sample size is too small for the lab to say that the test results are a representative sample of my sperm count, motility, etc. (Though, if the results were representative, they show good count and morphology, but poor motility, enough to push us into IVF/ICSI territory).

Jendeis and I are thinking that we'll have to move forward to another step, something more technical, like electro-ejaculation. Of course, our fertility clinic does not offer that procedure. We'd have to go to Johns Hopkins or another university-type clinic for that.

Has anyone out there dealt with this issue or with Johns Hopkins in particular? Any advice or resources that we should be looking into?

Thanks for your help!

I Am a TV Show

So, to my total and utter discredit, I watch Grey's Anatomy. Didn't even start watching till Season 3. Yes, I am a teenager.

On orders of my Fairy Godmother, I'm not allowed to watch the show by myself. Someone has to watch it with me because I tend to break down emotionally while watching. Usually, John Dear just sits next to me and plays on the laptop while I watch.

Here's where I have completely become a TV show. If you are not a loser like me and missed last night's episode, there was a patient who had experienced chronic headaches for years and years. His pain level was always at an 8 out of 10. He mentioned to one of the doctors that in the middle of all this pain he was feeling, his wife died. She had stood by him, took care of him, carted him to doctors and hospitals and then just died. He couldn't even feel the pain of his wife dying because he was in so much pain already.

I worry that this will happen to me and John Dear. That he will never stop being in pain. That I'll spend my whole life as a caregiver rather than a partner and die, before my time, worn out from a spouse who cannot/will not pull his own weight or any weight at all.

I'm not really sure what to do with that feeling. I wonder if we could get him on disability or something. He's not working, the job prospects don't look great. I mean at least if he did a majority of the housework instead of playing video games 90% of the day, I'd feel better. I've been trying to encourage him to maybe go back to school. At least he'd be doing something.

It's like living alone, only worse. If I was alone, when I left a room clean, I'd come back to it clean. Now, it doesn't matter, there's always a worse mess. I have to deal with all his crap too.

I'm sorry for this mopiness. I'm just too depressed to comment or post regularly. I am reading everyone's blogs though, so know that I am there.

Nothing to See Here

I haven't been posting because there's nothing really new going on. Everything's just blah.

Tonight marks the beginning of Yom Kippur (y-oh-mm keyPUR), the Jewish day of atonement. It is one of the holiest days of the Jewish year. On Yom Kippur, Jews traditionally fast and pray to atone for the sins of the past year and recommit to the new year.

The service tonight is called Kol Nidre (cole ny-DRAY) after the first prayer in the service. I've always loved to hear Kol Nidre because it is such a beautiful and plaintive melody. The prayer is repeated three times and the cantor (essentially, the prayer leader) sings it softly the first time and gets louder each time he chants the prayer. The room is so quiet, I always feel like this prayer is the closest we get to speaking with G-D.

When we greet each other, we say "g'mar chatimah tovah," may you be sealed for a good year in the Book of Life. We also wish each other an easy fast.

So, may you have an easy fast and g'mar chatimah tovah to you all.

Stillbirth Awareness and Research Act

See those new shiny buttons on the right? They were designed by AK_Sapphire in honor of National Infertility Week (October 19th-25th) and Pregnancy and Infant Loss Awareness Day (October 15th). You can get the codes for both buttons on her blog, Life, Liberty and the Pursuit of Pregnancy.

You can help to raise awareness of these issues by reading and following some or all of the following, a gracious plea by Antigone.

October 15th is National Pregnancy and Infant Loss Remembrance Day in the United States. More than 25,000 children are stillborn in the United States every year leaving mothers, entire families and communities devastated. Estimates of the rate of occurrence of stillbirth make it at least as common as autism.

Stillbirth is not an intractable problem. Greater research would likely significantly reduce its incidence, but good research requires good data. H.R. 5979: Stillbirth Awareness and Research Act is under consideration by Congress. This proposed bill would standardize stillbirth investigation and diagnosis, thus providing more data for the needed research. Better research means fewer children born still.

History and facts about H.R. 5979.
5/6/2008--Introduced.
Stillbirth Awareness and Research Act of 2008 - Expresses the sense of Congress that: (1) more states should enact legislation that allows the issuance of a Certificate of Birth Resulting in Stillbirth; and (2) the Director of the National Institutes of Health (NIH) should increase the allocation of funds and other resources for stillbirth research.

Amends the Public Health Service Act to direct the Secretary of Health and Human Services, acting through the Director of the Centers for Disease Control and Prevention (CDC), to establish and maintain a scientific registry of stillbirths in the United States, which shall include for each stillbirth information on the stillborn fetus and the mother's health and pregnancy as collected and submitted by states on the U.S. Standard Report of Fetal Death.

Requires the Secretary to: (1) provide for the development of a standard definition of stillbirth and a standard protocol for stillbirth data collection and surveillance; and (2) carry out a national campaign to increase public and state awareness of such definition and protocol and public awareness and knowledge of stillbirths.
Information cited from GovTrack.us H.R. 5979--110th Congress (2008): Stillbirth Awareness and Research Act of 2008, GovTracks.us (database of federal legislation). Accessed October 2, 2008

On October 15th, remember the thousands of unfinished children lost and the families who remain to grieve them. Honor them by taking action. Let's help pass H.R. 5979.

Action Steps:

Step 1. Use Your Blog to Enlist Others
-Copy the contents of this entire post and publish it on your blog immediately.

GOAL: Enlist 10 of your readers to spread the word

Step 2. Use Your E-mail to Enlist Others
-E-mail 5 bloggers and ask them (nicely and in an unspammy way) to publish these action steps on their blog. Consider contacting celebrity bloggers, political bloggers, medical bloggers, or bloggers who are not part of your reading community.

GOAL: Enlist 3 bloggers outside of your normal blog sphere to spread the word in other online communities.

Step 3. Help Pass the Stillbirth Awareness and Research Act
-By October 15th, publish a post on your blog supporting H.R. 5979 Stillbirth Awareness and Research Act. For maximum impact, title your post: "Stillbirth Awareness and Research Act."

GOAL: 1,000,000 Google results on October 15th when that term is searched for. Currently, Google only returns 20,400 pages - most of which have nothing to do with the bill.

New Year's Wishes

My rabbi included the following poem in his Shabbat message this week. I liked it so much, I wanted to share it with all of you. My inclusions are in brackets.

In the new year which now begins, these are my wishes for you:

May you experience no earthquakes, no hurricanes, no floods, and no dinnertime phone solicitations.
And if they come, may you have a flashlight, a radio, a cell phone, water, food, and a siddur [prayer book] ready, just in case.

May you see a good play, hear a great opera, and see no flashing police lights behind you.

May strangers greet you with smiles, and little children with sticky kisses.

May you have enough wealth to be able to give to tzedakah [charity], and enough left over to provide you with necessities:

May you have bread to eat and cake as well,

May you have a roof over your head and clothing to wear,
And may you help provide them for the hungry, the homeless and the ragged.

May your stocks come back,
And may your bank stay open,
And may your interest rate fall,
And may the IRS leave you a full 30% of what you earn to call your own.

May you banish all thoughts and conversations about the coming elections
For these next ten days,
So that you avoid fights with members of your family and your friends,
And may you remember that, no matter who is elected,
According to Hebrew National,
They all have to answer to a Higher Authority.

May you forgive the candidates for what they say about each other,
And may you remember that no one is as perfect as he claims to be,
And no one is as terrible as his opponent claims he is,
And forget the promises that they all make---because they will, as soon as they are elected.

May you be able to decipher your electric bill, your telephone bill, your credit card bill, and your income tax forms,
And the tiny, tiny print at the bottom of all these documents,
Which says in essence that they don't mean what is written above in big print.

May you live long enough to be able to drive automobiles which do not run on fossil fuels
And may this happen before you become an old fossil yourself.
May those of us who drive SUVs be blessed with enough wealth
To be able to fill them with gasoline enough,
To get to the corner store and back,
And may we not have to choose between having enough money with which to buy gas with which to get to the grocery store,
And having enough money with which to buy groceries when we get there.
And may our children, for the sake of whom we bought these vehicles in the first place
Never yell or fight but sit quietly buckled up, with their hands folded,
And never once ask us: Are we there yet?

May you learn how to control your television set,
And may you learn to cope with all the new buttons on the controls,
And may there be something worth watching when you finally figure out how to start your TV.

May neither you, nor your computer, ever be infected by a virus.

May peace reign over Israel,
And may its children not have to sleep in bomb shelters any longer,
And may all of its leaders, like Natan Sharansky, be people who have gone to prison BEFORE they ascended to high office, and not afterwards.

May the world become safe to live in for all of G-D's children,
And may some parents learn that it is not necessary to strap explosives onto the bodies of their children in order to attain paradise,
But that instead paradise can be found here on earth, if people will only learn to live together in peace.

May you stop rushing long enough to realize
How blessed we are
To be able to enjoy this amazing planet on which we live,
And may we try hard not to spoil it.

And whether you pray in the words of the machzor [a Hebrew prayer book],
Or in your own words,
May you feel the presence of G-D around you,
And may you love your G-D, with all your heart, and all your soul, and all your might,
And may you know that G-D loves you too,
And may G-D give you a shana tova u'metukah,
A good and a sweet new year.

Amen.

Written by Rabbi Jacob Pressman

Because We All Can

Fell asleep 6 minutes before the debate. Here's my atonement. Pass it on.