Tuesday, December 23, 2008

SIDS/SUID and Stillbirth – A National Research and Advocacy Symposium March 23-25, 2009

from First Candle

SIDS/SUID and Stillbirth –
A National Research and Advocacy Symposium
March 23 - 25, 2009 | Embassy Suites Hotel | Washington, D.C.

Welcome and Opening Speaker – Dr. Yvonne Maddox, NICHD

Space is limited, so register early to attend this innovative meeting. Leading researchers will present updates on current research and strategies for saving infant lives. There will be interactive workshops and a networking dinner for all researchers and attendees. The symposium will conclude with visits to Capitol Hill to encourage our nation’s lawmakers to support critical legislation and programming that will help us reach our goal of a future where all babies survive and thrive.

More details on the agenda will be posted on the First Candle website as they become available.

Family members affected by stillbirth, SIDS and SUID will be given priority consideration. After January 15, registration will be open to a more general audience. A non-refundable $25 deposit will hold your spot and be used to offset your food and beverage costs during the conference.

Hotel rooms will be available for $219 per night (plus tax), but more affordable housing options are being pursued; details to follow. If traveling by air, be sure to book early to take advantage of any discounted fares!

Tuesday, October 14, 2008

Pregnancy and Infant Loss Remembrance Day

On Oct 15th please participate in the Wave of Light to remember all the children that have died in the years past.
For more information on the Wave of light please visit October15th.com
Stillbirth Statics are tough to find and quote, but it is far more common that you may realize. I have heard everything from 1 in 125 births result in Stillbirth, to 1 in 1000. I have also read that as many as 71 infants are born still each day worldwide. I did read through the WHO (World Health Organization) 2006 Neonatal and perinatal mortality Global estimates which contained estimates of stillbirth rates worldwide. Now, I am even more sure that this is something that affect many families.

So light a candle on OCT 15th @ 7:00pm and remember all the babies; pregnancies, stillbirths and infants loss the world suffers through silently.

Tuesday, September 30, 2008

research study about how parents cope with pregnancy and infant loss

Please please participate.

Who is Doing the Study and What is it For?
The study is conducted by researchers at the University of Michigan in Ann Arbor, Michigan in the United States. We are trying to understand women’s experiences with a pregnancy loss or loss of a baby and how women use on-line message boards after a loss. This will help us to design on-line programs to help parents cope with this difficult event.
What are the Risks of Completing the Survey?
The main risk to mothers is simply that remembering a loss can be emotionally difficult. To protect mothers who participate, this survey is confidential. In addition, this study, like all research studies, was reviewed and approved by the Institutional Review Board at the University of Michigan (HUM00023103). You may choose not to answer a question or may stop the survey at any point. Message board staff have given us permission to post this survey, but they will not see any of your individual answers.
What are the Benefits?
There are no direct benefits to you from completing the survey, but your responses will help us to develop programs for other parents who have similar losses in the future. It is estimated the survey will take about 10 minutes to complete.
Can I Contact the Researcher or the University of Michigan if I have Concerns or Questions about the Study?
Yes. You may email the Primary Investigator at ktgold@umich.edu (University of Michigan, Department of Family Medicine, Department of Obstetrics & Gynecology) or you may contact the University of Michigan Institutional Review Board at 734-763-4768.

Thursday, April 17, 2008

NY State: Certificate of Birth Resulting in Stillbirth Bill--STALLED

Dear readers of this blog I am asking you all once again to help us in memory of all our children that are remembered here and all over the internet.

Please click the link below and let this assemblyman know just how important it is for families like us to be validated despite our loss. Especially, families that live in NYC we do not and will not receive a death certificate. So as far as our federal and local government is concerned our our children never existed. We know this is not the case but it sure would help to have a CBRSB. it would cost them very little to pass this bill, but it would have far reaching affects in healing many families.

The link below will take you to a web-form that will take just a few moments of you day to complete. There is only 1 undecided assembly vote, which is the Leading assemblyman of the Way and Means Committee where the bill has stalled for the second year. this is a simple request for families suffering a terrible tragedy. Give the the gift of validation that they their children count that they matter, that their child that has died had a life that mattered.

Even if this particular type of tragedy has not touched your life personally please take the time to click the link and send Assemblyman Farrrell a message of support for this bill, if you live in another state please also click the link you never know what might reach him by way of support.

The Certificate of Birth Resulting in Stillbirth bill has passed the Senate and is now STALLED in the Assembly's Ways and Means Committee under the leadership of Assemblyman Herman D. Farrell.

This is the same committee where the Bill stalled last year!

They get to decide:

+ Do parents who gave birth to a stillborn child deserve recognition of the birth process?

Assemblyman Farrell needs to hear from you. He needs to know that this bill is important to you -- as a mother, father, family member, friend, co-worker -- one who has suffered the tragedy of a stillborn child.

Your immediate help is needed NOW and will take less than one minute of your time.

Log on to the link: http://missingangelsbill.org/~jnevels/support.php?se_id=22

And send your SUPPORT for the CBRS Bill. It will only take 30 seconds.

Then *very importantly* forward the link to family, friends & coworkers. Ask them to log on to show their
support and to forward the link to their family, friends & coworkers.

This system works and to be effective we need hundreds of families to click on the link. Doing so will show Assemblyman Farrell and the Ways & Means Committee that this Bill IS important to NY families. The passage of this bill will allow parents who have suffered the tragedy of a stillbirth, the option to receive a Certificate of Birth Resulting in Stillbirth to acknowledge the birth process.

To watch the progress of the CBRS Bill, visit: cbrsbill.blogspot.com

Thank You for your support!

I all thank you for your support of this bill and bills like it your state. It does make a difference and it is something each of you can do to make a difference in our life and the lives of others like us.

with much love and gratitude for you help in this matter
Christine (Lucy's mom)

Thursday, April 3, 2008

Stillbirth Research Survey

hope you are all doing well. thought i would share something. this came into my inbox this morning i am sharing it please pass it on and in the box where it asks where you heard about the survey please put this blog. it is just so that Peggy knows where you are coming from. please feel free to pass the info on.


From: Peggy Lambert Peggy.Lambert@mail.wvu.edu

Subject: Re: Help

I am a nurse having worked 15 years in Labor and Delivery
and now doctoral
candidate at West Virginia University. Would your website
be willing to post the link to my survey about stillbirth
interventions in the forum?
Participation would assist me in learning more about
what interventions were important to women at the time
their baby died and what feelings they
experienced then and currently. This research is
intended to improve the care provided to women at the
time of stillbirth.

The survey is online and will take about 30 minutes
to complete.
If you have any questions, don't hesitate to write or
call me.
For your review, the survey may be found at:

Peggy Lambert Fink, MSN, FNP-C

Saturday, February 23, 2008

NY State: Certificate of Birth Resulting in Stillbirth bill

If you live in NYS and i have your email you may have gotten this from me already if not here you go! a call to action from our home to yours. please support this Bill.

From the MISS foundation

The Certificate of Birth Resulting in Stillbirth bill is being considered by your New York State Senate and Assembly members right now.

The bill is moving quickly in both the Senate and Assembly.

Your representatives get to decide:

  • Do parents who gave birth to a stillborn child deserve recognition of the birth process?

They need to hear from you. They need to understand why this is so important to you -- as a mother, father or family member -- one who has suffered the tragedy of a stillborn child.

Write, call or email your Senator and Assembly member today (sample letter below). Forward this email to family, friends & coworkers and ask them to contact their representatives.

Who is your Senator?

Find your Senator

Who is your Assembly member?
Find your Assembly member

Contact them now. Ask them to support the Certificate of Birth Resulting in Stillbirth Bill.

Then, Please forward this email to everyone you know. Ask them for their help.

Your representatives need to hear from you. They want to hear from you on this issue.

Thank you.

[sample letter]

Name of Representative
Legislative Office Building
Albany, NY 12248

Re: Certificate of Birth Resulting in Stillbirth Bill

Dear _____:

I am writing to ask for your support of the Certificate of Birth Resulting in Stillbirth Bill (Hyer-Spencer). This legislation would allow parents whose children are stillborn the option to receive a Certificate of Birth Resulting in Stillbirth to acknowledge the birth process.

Your support of this legislation will send a message of hope and compassion to bereaved parents who suffer the devastation of a stillbirth.

[Include personal story, if you choose to]

Nearly 30,000 babies are stillborn in the US every year, making it the leading cause of infant death. In half of all cases there is no medically discernible reason, causing many to liken it
to an intrauterine SIDS. In fact, stillbirth kills more than eight times as many babies as SIDS every year.

Approximately 2,000 babies are stillborn in New York State annually, and for every stillborn a minimum of 10-20 people are affected. Thus, this issue impacts 20,000 - 50,000 individuals
every year in New York State.

These certificates will bring much needed attention to this issue and may be instrumental in uncovering stillbirth's mysteries, thereby saving precious lives.

You have the opportunity to enact legislation that has the potential to save lives and has zero cost implications.

Your community trust you to represent it. I urge your enthusiastic support of the Certificate of Birth Resulting in Stillbirth bill and will be following it closely.


Address & Phone

Sunday, January 20, 2008

Certificate of Still Birth: CA

Copied from the Modesto BEE

for the full article click here.

Posted on Wed, Jan. 16, 2008

Legislation allows parents to obtain a stillbirth certificate

Stephanie Gray keeps memories of her son, Noah, on a shelf in the family's Modesto apartment, complete with picture books, a plaque with little footprints and a candle that is often lit.

The only thing missing is a certificate acknowledging his birth. She and her husband, David, received only a death certificate after Noah was stillborn Sept. 21, 2002.

"We had dreams, hopes, everything for this baby, and in a blink of an eye, he was gone," Stephanie Gray said.
Under a new law, effective Jan. 1, parents of a stillborn can receive a type of birth certificate through a county office of vital records or the state Department of Vital Statistics.

California, which is calling the document a "Certificate of Still Birth," joined 20 other states that issue the documents to parents who request them. Formerly, any kind of birth certificate was denied these parents because the pregnancy did not result in a live birth.

In California, a fetus must be beyond 20 weeks of gestation for the parents to receive a certificate. The cost for that document is $20.

An estimated 26,000 stillbirths occur in the nation each year, with birth defects, infections or accidents with the umbilical cord among the most common causes. Often, all appears well within days of delivery.

Nurses couldn't hear heartbeat

Supporters of California's Missing Angels Act say the certificates are a tangible memento after a grieving mother. According to the Arizona-based Mothers in Sympathy and Support Foundation, which supported the laws in different states, the documents also are a genealogical record and help the parents to heal.

Gray, 25, said her first pregnancy was going well, then at six months she had episodes of premature labor pains. During each stay in the hospital, she was given drugs to stop labor and sent home, she said.

Everything appeared to be fine during a checkup three weeks before her due date. When she and David went to the hospital for the delivery two days later, however, nurses who put a monitor to her belly couldn't hear a heartbeat.

An ultrasound determined the boy had died.

"I just remember yelling and screaming; it was like an out-of-body experience," Stephanie Gray said. "It's like someone else stepped in, and I lost it."

Stephanie gave birth to the 5-pound, 14-ounce Noah at 12:40 a.m. and pulled herself together to spend precious time with him. For seven hours, the parents held Noah, caressed his brown hair, bathed him and dressed him.
Noah had his father's hair and chin dimple, and long fingers for playing the violin like his mother. Stephanie snipped a lock of his hair and took his footprints as keepsakes.

The cause of death was never known, although their doctor said the placenta was small and might have stopped providing oxygen.

When the funeral home gave the parents a death certificate, Stephanie said, her first thought was about getting a birth certificate. She called the hospital and was told she didn't qualify for one, she said.

In 2002, a state bill to officially acknowledge stillbirths failed to pass, because of fears it could weaken abortion rights and foul up the state's birth records.

Senate Bill 850, sponsored last year by state Sen. Abel Maldonado, R-Santa Maria, was amended to alleviate the concerns. The stillbirth certificates will be issued only to parents who ask for them and they are not counted as live births.

Parents need to request a form

Gray said she wrote letters to Gov. Schwarzenegger and state legislators, urging them to approve the California law. She said her desire for a certificate is part of dealing with the worst crisis of her life.

She didn't want to eat, see people or look at young children, she said. She went on to have two boys, Cameren, 4, and Jayden Noah, 2.

The parents said the Stanislaus County clerk-recorder's office in downtown Mo- desto wasn't aware of the new certificates when David inquired early this month. Stephanie was able to get assistance from the Department of Public Health office at 820 Scenic Drive, which also handles birth records.

Dr. John Walker, county public health officer, said the health department will issue a Certificate of Still Birth for local parents who who had a stillbirth after Jan. 1.

Parents need to submit a request to the state Department of Vital Statistics for stillbirths before that date. Stanislaus County public health can give parents the request form, which must be completed and mailed to the state office, or parents can call the state vital statistics office in Sacramento. Certificates will be issued even if the stillbirth occurred many years ago, the law says.

Stanislaus County had 51 stillbirths in 2007 and 50 in 2006. As of Tuesday, three people had requested the new certificates, officials said.

Stephanie Gray said she was told it'll take 12 weeks to get the two certificates she ordered, one for framing, the other for Noah's baby book. On holidays and his birthday, the family has celebrated Noah by going to Monterey or taking a boat ride under the Golden Gate Bridge to throw flowers on the water.

"I am not in so much pain as before," Stephanie said. "I think of him but don't hurt as bad as I did."

Bee staff writer Ken Carlson can be reached at kcarlson@modbee.com or 578-2321.

How To Apply For Certificate
Stanislaus County parents who lost an unborn baby after Jan. 1, 2008, can request a Certificate of Still Birth from 8 a.m. to 5 p.m. from county Public Health, 820 Scenic Drive, Modesto. Call 558-8070. Parents who lost a baby prior to Jan. 1, 2008, can get a request form from county public health or call the state Department of Vital Statistics between 8 a.m. and noon Monday through Friday at (916) 445-2684. Parents in other counties can inquire at county vital records offices or call the state number.

Edited to include Addtional articles:

Inside Bay Area.com

More info on the Missing Angles Bill and how you can make changes in your state.

Tuesday, January 8, 2008

Memorializing our babies

On our sister Blog i wrote few post about memorializing our babies.

rather than copy and past everything to each of our three blogs i thought i would write this short post and include links to each of those posts.

It is never to late to memorialize your baby so if you are afraid that you missed an opportunity to celebrate your babe and mourn your loss you have not.

I hope my post helps.

Thursday, January 3, 2008


I have not shared many poems because i think poetry and what ones feels when reading poetry is a) very personal and b) subjective. But in this case i think that one thing holds true for all of us mothers, fathers, siblings, grandparents, aunts, uncles, cousins and even friends touched by the loss of pregnancies, babies and infants:  we are outraged and hurt that such a awful thing should happen to us.
When a child, a baby, an infant, a being so young and untainted by this world's sins and pretense is taken from its family and friends there is a deep fissure that is created in each and every heart that hears about it. That fissure can only be filled with words of comfort, sorrow and sometimes outrage at the unjustness of it all.

in the early days of our loss these 2 poems encompassed my personal feelings of death and dying.  They brought both my anger and my sorrow into a place where i hoped others would understand. We used an adaptation of  W.H. Auden's Stop the clocks for Lucy's memorial service, which watson adapted just the final stanza. if you would like to see that here as well please let me know. The Emily Dickinson stanza speaks to the hope that my child was always going to be with me. If you know me i have spoken often about the duplicity of feeling in grief once again i share the dark and the light of my sorrow.  

as always i wish you all peace, light and love as you as you walk the painful path. ~ Christine

Stop all the clocks, cut off the telephone

Stop all the clocks, cut off the telephone,
Prevent the dog from barking with a juicy bone,
Silence the pianos and with muffled drum
Bring out the coffin, let the mourners come.

Let aeroplanes circle moaning overhead
Scribbling on the sky the message He Is Dead,
Put crepe bows round the white necks of the public doves,
Let the traffic policemen wear black cotton gloves.

He was my North, my South, my East and West,
My working week and my Sunday rest,
My noon, my midnight, my talk, my song;
I thought that love would last for ever: I was wrong.

The stars are not wanted now: put out every one;
Pack up the moon and dismantle the sun;
Pour away the ocean and sweep up the wood.
For nothing now can ever come to any good.

~W.H. Auden

And if I go, while you're still here

And if I go, while you're still here
know that I live on,
vibrating to a different measure
behind a thin veil you cannot see through.

You will not see me,
so you must have faith.

I wait for the time when
we can soar together again,
both aware of each other.

Until then, live your life to its fullest
and when you need me,
just whisper my name in your heart,

I will be there.
~Emily Dickinson