Newly Introduced Legislation will Support Education and Prevention Efforts for Stillbirth, SIDS and other Sudden, Unexpected Infant Deaths (SUID)

Hi Everyone-

I am writing you to ask for you to take 5 minutes today to support a very important piece of stillbirth/SIDS legislation that was introduced into Congress yesterday. As you may know, I traveled to DC twice in the last two years to advocate for stillbirth legislation -- some of you supported me in making those trips (thank you!!!). As a result of a visit I made (along with three other mothers and a doctor from First Candle) with a staffer from Obama's office (before he was president), a piece of legislation was drafted by his office. He became President before it could get any traction, but he hand-delivered it to Sen. Lautenberg and asked him to take it on. That revised bill was finally introduced yesterday, along with a companion bill in the House.

On behalf of the hundreds of families I have written about over the last four years, and in remembrance of Avery, I ask you to contact your Congressional Representatives (a total of three emails and/or phone calls) to implore them to support the Stillbirth and SUID Prevention, Education and Awareness Act of 2009 and become co-sponsors. The bill would expand activities to identify the causes of stillbirth, identify ways to prevent it in the future and increase education and awareness about the issue among healthcare providers and parents. Below are links:-To find out the contact info of your Rep/Senators by typing in your zip code. -A fact sheet about the bills-A sample letter you can cut and paste in an email to make it simple. Including your own story is also helpful!

In order for this bill to have a chance at passing, we need as many co-sponsors as possible. That means getting support from all over the country, so I am also asking you to email this to anyone else you think can help and/or post this on your web/social networking site. You can also just post the link to First Candle www.firstcandle.org.

Please take 5 minutes to show your support for the bill right now...early support is key at getting momentum going.

Thank you for reading this...and for considering my request. I don't usually ask people to take political action and I sometimes feel uncomfortable when others ask me to do so, so I can understand if you would rather not get involved. But if you want to and don't have the time today, please consider doing it as soon as you can.

With deep gratitude, Suzanne


Newly Introduced Legislation will Support Education and Prevention Efforts for Stillbirth, SIDS and other Sudden, Unexpected Infant Deaths (SUID)

First Candle is pleased to announce that the Stillbirth and SUID Prevention, Education and Awareness Act of 2009 was filed July 14 by Senator Frank Lautenberg, D-NJ. A companion bill was filed in the House by Frank Pallone, Jr., D-NJ-6. This bill would improve the collection of critical data to determine the causes of stillbirth SIDS and SUID, increase education and awareness about how to prevent these tragedies in the future and expand support services for families who have experienced a stillbirth, SIDS or SUID loss.

Every year there are more than 25,000 stillbirths in the United States. For more than half these deaths there is no known cause, leaving parents with more questions than answers as to why the baby died. The bill would expand activities to identify the causes of stillbirth, identify ways to prevent it in the future and increase education and awareness about the issue among healthcare providers and parents. In addition, there are more than 4,600 sudden unexpected infant deaths each year (including SIDS) and 200 sudden unexpected deaths of children between the ages of one and four. This bill encourages states to complete scene investigations to better understand why these children died, establishes a national database to track these deaths and identify risk factors to prevent them in the future, supports more comprehensive reviews and creates a national public awareness campaign to educate parents and caregivers.

We hope you will join us in supporting this legislation.

Please help by contacting your representative in the House and two Senators within the next week, urging them to co-sponsor this important bill.

The more co-sponsors the bill gets, the more likely it is to pass quickly through the House and Senate.

Participating in First Candle’s letter-writing campaign is easy!

Visit www.house.gov to get contact information for the Congressman in your District. You will need your 9-digit zip code. If you do not know your 4 digit extension, you can get it at http://www.z2systems.com/nps//servlet/DisplayLink?orgId=fc&emailId=306112&linkId=2591&targetUrl=http://zip4.usps.com/zip4/welcome.jsp.
You will then be able link directly to your Representative’s website.

Visit www.senate.gov to get contact information for your states two Senators. Simply select your state from the drop down menu to connect to your Senators’ websites.

We encourage you to call your representatives directly, or set up an appointment to meet with them face-to-face. Writing a letter or sending an email can be effective as well. Emails can be sent directly through your representatives’ websites.

We have provided a Fact Sheet about the bill, as well as a sample letter to help guide you.
Whether you are writing a letter or speaking with your representatives directly, be sure to include your personal story.

First Candle would love to receive a copy of your letter or an email detailing your conversation with your representatives for our files.

Members of Congress rely on input from their constituents to help them better understand what issues are important to those they serve. Help give our babies a voice!

Please feel free to contact Laura Reno, 800.221.7437 or laura.reno@firstcandle.org with any questions you may have.

First person

When Thelma Williams' baby died at birth, his body was whisked away and he wasn't spoken of again. It took 40 years to confront her grief and finally give a name to her lost child - James
As told to Kate Hilpern

The Guardian, Saturday 10 January 2009

I know I'm not the first woman to have found something she would rather not have discovered in her husband's suit pocket. In my case, it was a notification of the burial of our son. I didn't even know he had been buried until that moment. I had been told when I was six months pregnant that he would die the moment he left my body and somehow I just accepted it when he was whisked away and never spoken of again. This was the 1960s. You didn't talk about such things.

At least, I think it was the 1960s. That's the thing. It could have been 1970. I couldn't tell you what day it was, what season, let alone which year - such was my determination to follow the advice and forget, a task only momentarily but acutely interrupted by the burial slip.
We had another baby later on. I did everything they told me, resting almost solidly for nine months. On 26 December 1971, in the afternoon, Emma was born, a beautiful little girl weighing 7lb 13oz. Home we went with joy in our hearts and everything ahead of us.

It was only when Emma had her own baby, Millie, that it hit me. They say time heals, but there has been nothing chronological about my journey of grief. Nor anything predictable. Out of nowhere it came, threatening to drive a wedge between me and my granddaughter, a granddaughter I had loved unconditionally from the moment I knew she was conceived. But love is different from bonding, I have learned. Bonding is something I could not do with Millie until I acknowledged the loss of my baby boy. And when I had done that - and at last found a place for him to rest in my consciousness - I discovered a bond closer than I could have imagined.

It was 2004, the year before I turned 70, that Emma became pregnant. It was such wonderful news and at first I accepted my niggles of fear as normal. Doesn't every mother of a pregnant daughter worry like mad that everything will be all right? But my anxiety kept growing. Emma knew the reason immediately. Once she reached adolescence, I told her about my stillbirth. She had wanted to know why she had no brothers and sisters. I had surprised myself with how "together" I sounded when I spoke of it. I could relay the facts - facts of which I had hardly mentioned in decades - without a tear in my eye and after I told Emma, I found I could tell others too. Provided I stuck to the facts - and didn't enter the realm of feelings - I sounded like a survivor.

Emma knows me very well and as the weeks of her pregnancy totted up, she spotted the cracks in my shield. She wanted to protect me, to reassure me that everything was OK, but understandably she was starting to feel anxious too. Could what had happened to me happen to her too?

We spoke to the midwife and the specialist. They assured us that all was well. The specialist knew about the condition that befell me when I was pregnant and was shocked to hear how I was treated. He used the word barbaric. He asked if I would like to see the scan of Emma's baby for myself, so I could feel comforted. I did see the scan but I didn't feel comforted. More

Book deals with joy and grief of twins

Book deals with joy and grief of twins
Frisco: After losing one daughter, mother chronicles feelings
12:00 AM CST on Thursday, December 27, 2007
By DAN X. McGRAW / Special Contributor to The Dallas Morning News


Jennifer Hander plays with daughters Alexa, 2, and Addison, 13 months, at their home in Frisco. Ms. Hander has published a book, A Place of Peace, about the loss of Alexa's twin, Alysa.
They show her first day and her last, and what could have been for the Hander family's first pregnancy.

But 28 days after she was born, Alysa died because of complications of twin-to-twin syndrome. Her sister, Alexa, survived.

"We thought we were having the perfect pregnancy," Jennifer Hander said. "We were scared and shocked when we found out."

As Ms. Hander cared for Alexa during the first year of her life, she chronicled her feelings of losing one of her twin daughters. This year, the Frisco mother published a book, A Place of Peace, that documents that journey.

The twins' condition was diagnosed six months into the pregnancy. The syndrome causes twins to share blood vessels throughout the pregnancy, and at some point, one baby transfers its blood to the other, Ms. Hander said.

The cause of the syndrome, which occurs only in identical twins, is not known, Ms. Hander said.
Like many new parents, the Handers were unaware of the syndrome. The twins were delivered an hour after their parents were told about it.

Doctors who delivered the twins predicted that the Handers had a 90 percent chance of losing one child and an 80 percent chance of losing both.

"We just hoped that things would be OK," Ms. Hander said.

Because of the sudden transfer of blood, Alysa was left with very little blood in her body, while Alexa had too much blood. Doctors at the Medical Center of Plano worked to correct both problems.

However, 28 days later, Alysa died in her mother's arms. During those days, Alysa suffered bleeding in her brain that proved fatal.

"You are living the two extremes," Ms. Hander said. "You are mourning the loss of one twin but celebrating the life of another. The other twin serves as the reminder of what you might have had."

Because of the critical condition of Alexa, doctors ordered Ms. Hander to remain at home for the first four months of Alexa's life, and visitors had to be diligent about washing their hands to avoid getting the baby sick, said Lex Hander, their father.

"We had to be very strict," Mr. Hander said. "It was definitely a time she [Jennifer Hander] surrendered herself."

As Ms. Hander watched Alexa, she jotted down her feelings and thoughts of losing Alysa. She began to confront her feelings head on. The journal eventually evolved into a book about her experience.

"I was hesitant to publish it at first, because it has my deepest, darkest thoughts," Ms. Hander said. "But I was able to get over that, and my hope is that people can see me as an example."
Ms. Hander said she hopes people who read the book can use it to confront their feelings of losing a twin or become educated about the syndrome.

"If I can help only one person, it was worth it."

As Alexa grows up, Ms. Hander is teaching and reminding her of her sister. Ms. Hander refers to Alysa as the other sister who is an angel to Alexa, and it isn't something she is about to give up.

"It is just something that I intend to raise her with," Ms. Hander said. "I don't want it to be something she would be distraught about later."

For grieving parents, an investigation

By Lee Bowman Scripps Howard News Service

It starts with a phone call about a small life suddenly ended, about a baby found lifeless, unable to be revived.

Almost all of the more than 4,000 sudden and unexpected infant deaths in this country each year prompt an autopsy and a detailed investigation into the circumstances.

Details vary from jurisdiction to jurisdiction, but most of the time, the investigation begins at a hospital. Emergency medical workers usually try to resuscitate infants who aren't breathing, and rarely concede the fight before getting a baby to an emergency department.

But whether an infant is pronounced dead at a hospital, the home or some other setting, the need for police or investigators from the local coroner or medical examiner to quickly begin gathering facts inevitably intrudes on grieving families.

"The shock hit me so hard at the hospital," said April Poole of Huntsburg, Ohio, of the moments after she lost her daughter, Sommer, in 2005.

"After they pronounced her, they let me into the room to see her, but they'd left the breathing tube in her throat. It just seemed so cold to me."

Rachel Yerbich, whose son, Benjamin Allen, died suddenly in Granite Falls, Minn., last September, recalls spending much of the night holding her son in a family room of the ER.

"They unhooked him from all the machines and let me carry him in there and say goodbye, let my family gather with me to say goodbye," she said.

But other parents report not being able to hold, or even touch, their dead infant at a death scene, even at the hospital.

"There are some medical examiners who are totally against allowing contact with the infant's body before the investigation," said Dr. Deborah Kay, assistant chief medical examiner for the Virginia Office of the Chief Medical Examiner's central region in Richmond.

Kay said the Virginia medical examiner is issuing new guidelines for physicians and hospitals caring for infants and children who die suddenly and unexpectedly and whose deaths are subject to investigation.

"We wanted to have some consistency in what's being done around the state, while trying to be compassionate to the families," Kay said. More

The tragic human cost of NHS baby blunders

Errors and negligence that result in stillbirths or disabled babies are costing Britain's hospitals billions in compensation. In this investigation, The Observer reveals how staff shortages are wrecking the lives of countless parents.

Denis Campbell
Sunday September 23, 2007
The Observer

What began as a routine pregnancy but turned into a tragedy for one family will finally end this week in a West Midlands courtroom. The hospital charged with caring for the mother will finally agree to pay £5m in damages to the parents of a boy left in a wheelchair, unable to communicate or do anything for himself, after suffering cerebral palsy because of mistakes made by staff during his birth.

It might sound like a lot of money. But consider - it costs £120,000 a year to provide the 24-hour, all-year-round care needed by the boy, who is now 16. The imminent award also reflects the fact that he will never be able to work, and that his parents have had to move to a bungalow and had it specially adapted to cope with his needs, such as a therapy room where he tries to do gentle exercises to stop his muscles from wasting away from moving around so little.

His parents, who have asked not to be named for legal reasons, would rather it had never come to this. 'When I told the boy's father that the report into the case we had commissioned from an independent obstetrician had said that it was negligence, that someone at the hospital hadn't done their job properly and that the care was sub-standard, he began crying,' recalls the family's lawyer, Lindsay Gibb, of solicitors Irwin Mitchell in Birmingham. 'He wanted us to tell him that it was no one's fault, that it was just one of those things, so to learn that it was avoidable was very difficult for him.'

The hospital's first blunder was to send the boy's mother home after hospital staff had failed to induce the birth. An expert witness who gave evidence for the family said that, given the late stage of her labour, she should definitely have been kept in until the baby arrived, if necessary by Caesarean section.

Later, when she was back in hospital again, the child became distressed while he was being delivered and suffered a sudden loss of air to his brain when meconium, the result of his first bowel movement, seeped into his lungs.

Usually, when maternity staff realise that is occurring, they suck out the meconium. But when the anxious personnel attending the woman sought advice by phone from a neonatologist, a specialist in dealing with newborn babies, the doctor seems to have failed to appreciate how serious the situation was. Her guidance meant nothing was done to tackle the baby's oxygen starvation and respiratory collapse. More

CiaoLapo Onlus

Please note the addition of a new link in the sidebar - to CiaoLapo Onlus.

The founder, Claudia, writes:

www.ciaolapo.it/en is the website of CiaoLapo Onlus, a non-lucrative, non-religious association founded in 2006 by my husband and I (both medical doctors) after the stillbirth of our second child, Lapo. Aims of CiaoLapo Onlus are to promote research on stillbirth and to offer psychological support to parents after stillbirth or perinatal death. We are currently offering weekly online self-help groups to breaved parents and free online psychological and gynecological consults to the associates. During last March, our first national congress was held in Florence and the second one is going to take place in October.

Perinatal Loss: improving care and prevention

29 September - 2 October 2007
Birmingham, UK

This international conference is hosted by Sands and the Perinatal Institute, on behalf of the International Stillbirth Alliance.

visit the conference website here www.isa2007.org
download the conference flyer here
to register visit the conference site or register directly with Profile Productions

The conference will focus on perinatal loss – the human impact, the causes, and the possibilities for prevention. Its purpose is to gain insights and ideas for future collaborative initiatives to reduce the burden of perinatal death.

This is a rare opportunity to bring together researchers, bereaved families, clinicians, health care professionals and support organisations from many different countries.

Many clinicians and scientists devote much of their working lives to furthering the understanding of adverse pregnancy outcome. Many bereaved parents, knowing the real consequences of baby loss, are committed to improving the care that others who have suffered a loss receive. Both groups have much in common and together can represent a very powerful force for change.

Aims:

• to present the human consequences of stillbirth and other perinatal loss
• to share information on current activities and research programmes
• to strengthen collaboration on initiatives to reduce perinatal death
• to share knowledge and experience of best practice in care when a baby dies
• to encourage networking and informal exchange.

More

New Zealand children’s picture book helps to cope with the death of a baby

A New Zealand picture book aimed at helping children to understand the death of a baby in their family/whanau will be launched in Wellington by Mayor Kerry Prendergast on Monday (2 July).

What’s Happened to Baby? features illustrations by renowned Wellington illustrator Ali Teo, and helps parents and caregivers to guide young children through the experience of this difficult loss.

The book has been produced by skylight – the national support organisation aimed at building resilient young New Zealanders – in association with SIDS Wellington (Sudden Infant Death Support) and SANDS Wellington (Stillbirth and Newborn Death Support).

skylight’s resource manager, Tricia Irving, said What’s Happened to Baby? had been carefully designed to match a wide range of bereavement situations including miscarriage, stillbirth, cot death, and accidental or natural deaths of an infant or toddler.

“In this way it has been developed as a book that can serve and support a large number of bereaved New Zealand families/whanau,” she said.

“The death of an unborn or newborn child is extremely difficult for parents themselves to comprehend, let alone for their other children to understand. This book helps families/whanau to cope and deal with the grieving process together,” she said.

The book also features information to assist adults in supporting their bereaved children. More

It can happen to anyone

Gordon Brown is the new prime minister of the UK. Sadly he understands something about losing a much loved baby, suddenly and shockingly. It doesn't sound right to say "it's good" to have someone in a position of world power who understands the tragedy of losing a baby, but I guess you know what I mean.

When my first baby died almost a year ago, I struggled in the beginning to understand that I wasn't specifically chosen for this ordeal. It really can happen to anyone and can be completely indiscriminate.

Gordon Brown was the Chancellor of the Exchequer in the UK when his daughter Jennifer Jane Brown was born seven weeks prematurely by C-section. Her mother had a low level of amniotic fluid and Jennifer had IUGR. She was expected to be fine despite her low birth weight but she died ten days later after a brain haemorrhage, a common occurrence in pre-term babies.

I can imagine that, since she was born on 28th December and died on 7th January, the festive period brings back so many emotions for her parents.

Gordon and Sarah Brown now have two sons. Their first son was born two years after Jennifer Jane. Their second son was diagnosed with cystic fibrosis when he was four months old.

You can read an archive news story from 2002 about Jennifer Jane Brown here.

Joy for parents after babies' deaths

Having three babies die in two years meant Claire Wright dreaded Mother's Day.

But this year will be different after the birth of healthy daughter Zoe in January.

"Before she was born I was really excited and eager to bring her home," says Claire. "It seems more natural to be a mum to a living baby, than to babies who have died." (continue)

In Turnabout, Infant Deaths Climb in South

HOLLANDALE, Miss. - For decades, Mississippi and neighboring states with large black populations and expanses of enduring poverty made steady progress in reducing infant death. But, in what health experts call an ominous portent, progress has stalled and in recent years the death rate has risen in Mississippi and several other states. (continue)

Email Recieved from Cailin’s Memories website

Cailin’s Memories is a not for profit, 501©3 tax-exempt corporation founded for the purpose of helping families who have lost their babies from miscarriage, prematurity, stillbirth, birth defects, or SIDS. We also will attempt to help and support families experiencing infertility. Our organization supplies hospitals education and resources to care for these families through our memory box/packet program.

Due to the nature of the types of babies that we care for, we have created two types of memorabilia for our families a memory box or a miscarriage packet. Both have been devised to validate the life of their child. Many of the items are in both the box and the packet because these items are tools for life after the loss of their little one. Some items included are: a poem journal with a book mark; Cailin’s Candle, a remembrance candle; a silk flower; a pregnancy and infant loss awareness support ribbon; a forget-me-not seed packet and an angel bear.

With the start and opening of our venture we dedicate this lifework to all babies and the importance of them in the family unit. All babies will be honored with our work; whether they are born alive or not; if they are born 5 weeks into a pregnancy or 40; if they live for 5 minutes in NICU or 5 months at home; weather they are born perfect or imperfect…

We concentrate mainly on our lost babies since this area in particularly is lacking in our society today. We will do our best to raise the awareness of our plight and to show the world that our babies deserve the same respect and honor as any other baby--and in fact we will accept no less. This starts with our memory making of our babies, thus validating there short lives. It continues with our remembrances of them and the honoring of them through special rituals. It is ongoing for the families lifetime in the respect of their wishes by the rest of society.

Mission Statement: Cailins Memories provides support to families experiencing perinatal loss. ‘Perinatal’ defined as preconception through the first year of life.

Our Vision: We will strive to reach the broadest population possible to improve and maintain optimal emotional and spiritual health and well being. We support families experiencing infertility, losses as experienced through the adoption process, all pregnancy related losses and infants born postnatal through other processes such as SIDS.

Our Values: The way Cailin's Memories will provide support is three-fold:

1. The physical making of memories via the 'memory box program' provided to bereaved families. We make physical momentoes of lost babies by way of picture taking, foot and hand printing, foot and hand molding, etc. All momentoes are wrapped in a 'Memory Box' for families to keep forever.

2. We will provide education to families via handouts, support information (list of groups, websites, etc.). We also provide education to doctors groups, hospital staff, and any ancillary staff caring for families experiencing a loss via inservices, conferences, and 24 hour available help.

3. Community advocacy and awareness will also be obtained through the above activities. We will also pioneer new campaigns to promote our mission.

Our organization is currently in 10 area hospitals, serving 13 different nursing floors.

Please feel free to contact us through our website http://www.cailinsmemories.org/ and please pass along the word about who we are.

Thank you for your time.

Jean Rowe RN and Lesley Gorny-Hornbeck RN
Founders of Cailin's Memories, Inc

People Interview with Reverend Run & Justine

Reverend Run (formerly of rap group Run-DMC) and his wife Justine spoke to People magazine about the loss of their daughter, Victoria Anne. The baby, who had been diagnosed in utero with severe birth defects, died hours after being born via C-section last September.

The March 31 article quotes Justine saying, "[Today] I can talk about it, but if I stop to literally revisit, I start crying so fast because I can go right there. Women need to know you only need to mourn quickly. Don't try to think of [the baby's] eyes. It doesn't sound nice, but it will help them in the long run. I wouldn’t have been able to help my kids get to school in the morning if my husband didn't say, 'We have to keep moving.'"

Reverend Run continues, "Diggy might have taken it the hardest, but I didn't let him. I had him out on the skateboard the first day. Basically we teach our kids thankfulness. We all cry, but not a long period of it. We don't have pictures [of Victoria Anne]. We don't look back. We don't want the walls of our house to start crying, and everything to just crumble around us."

I will refrain from editorializing here, but feel free to add your comments.

New York Times article on perinatal hospice

A March 13, 2007 article in the New York Times discusses options for parents facing poor prenatal diagnosis or stillbirth. Hospice programs help parents make the most of the brief time they have with their babies.

National Vital Statistic Report

The Centers for Disease Control (USA) issued their most recent National Vital Statistics Report in February of 2007. The report dealing with Fetal and Perinatal Mortality in 2003 can be found here.

Oprah: Babyloss Theme

The Oprah Show is currently looking for people who have experienced the loss of a baby.

To submit your story, please visit Oprah's website.