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

MISS Foundation News Release - SIDS

Soft bedding found to be hazardous to infants
Arizona company teams with the MISS Foundation for safer alternative to crib blankets

Anthem, AZ - Despite the Consumer Product Safety Commission stating that soft bedding in the crib may be hazardous to babies under 12 months old, parents across the country continue to unwittingly endanger their child’s safety by using crib blankets, bumper pads and other soft bedding. The risk is unnecessary and the solution is practically old-fashioned in Europe – and lauded by many U.S. pediatricians, health experts and now the MISS Foundation (www.missfoundation.org), an international organization that supports grieving families after a child’s death and educates on infant death prevention and awareness. Earthwalk Design LLC is proud to announce their partnership with the MISS Foundation to promote safer sleep practices for babies under 12 months of age. Their mutual goal is to spread the word about the potential risks of soft bedding by offering infant and toddler “sleep sacks” as a safer alternative to standard crib blankets. A portion of proceeds will be donated back to the MISS Foundation.

“Sleep sacks are wearable blankets that cannot be kicked off or cover a baby’s face,” states Christina Alborn, owner of Earthwalk Design and www.pampersack.com. “Our PamperSack™ sleep sacks are not a garment, but are worn over pajamas. They keep a baby warm like a blanket would, but won’t cover a baby’s face like soft, loose bedding can.” Sleep sacks have been used extensively in Europe for the last thirty years.

Soft bedding, rebreathing and the SIDS factor

Soft bedding has been linked to a condition called “rebreathing.” Rebreathing occurs when bedding molds around or covers a baby’s face as they sleep, creating a stale pocket of expired air eventually reduced to carbon dioxide. Oceanside, CA, based pediatrician Dr. Douglas Stein states, “It has been established that rebreathing, when infants breathe their own exhaled air, is a theory associated with Sudden Infant Death Syndrome (SIDS). Laying infants to sleep on their backs has reduced the incidence of SIDS, but babies can still roll and therefore soft bedding is to be discouraged.”

“My goal is not to be an alarmist or to give parents a false sense of security,” says Alborn. “I just firmly believe in reducing identified risk factors until we have more information.” Joanne Cacciatore, CEO and Founder of the MISS Foundation, echoes the sentiment by stating, “Sleep sacks are a common sense choice. They have been recommended by medical associations, including the American Academy of Pediatrics, to reduce bedding related mortality. If these products help to save one baby’s life, we are grateful.”

MISS Foundation News

Important News from the MISS Foundation:

July/August newsletter available online.

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The Alliance of Grandparents a Support After Tragedy (AGAST) has officially merged with the MISS Foundation as a program outreach to grieving grandparents.

AGAST, founded by SIDS grandmother, Sandra Graben, began as an outreach to grandparents after the death of a grandbaby from SIDS. It quickly morphed into an outreach to all grandparents after any grandchild's death.

Because their mission of overall family support was so well aligned with the philosophy of the MISS Foundation, Graben and Joanne Cacciatore, MISS Foundation CEO and founder, met and determined that the unification of the groups would be beneficial for families experiencing life worst tragedy: the death of a child/grandchild.

The merger became official last week.


The name of the outreach will be: MISS Foundation's AGAST Outreach Program and will include the newsletter, memorial cards, grandparent-to-grandparent mentoring, and family support packets.

If you have any questions about this important merger, please contact info@missfoundation.org.

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You can listen to the song, Soaring Away, at the band's profile.

Dear Friends of the MISS Foundation,

Ten years ago this week my wife and I lost our son.

Needless to say, our world was shattered and we were catapaulted into a downward spiral of grief, despair, and depression.

We have managed to move forward, but - as you are well aware - it changes you forever.

More recently, I have had the privilege of discovering the MISS Foundation when I was approached by MISS volunteer Barbara Kurtz and asked about doing a fundraiser with my band, 4 Car Garage.

What has come of it is the song "Soaring Away."

"Soaring Away" is an original song that I wrote in honor of my son, Bradley.
It is my attempt to describe the feelings that are harbored when you go through something like we have and that you hope nobody else ever has to experience.

It is an emotional, bittersweet song, but I hope that someway it can help in the healing process for all of us.

Coincidentally (or not!), the song was accepted by iTunes on the ten year anniversary of Bradley's birth.........that's got to be a sign that our children are 'soaring away.'

All proceeds from the song will go to the M.I.S.S. Foundation and their efforts. There is a link to the iTunes store below.....take a listen and download it if you want (it's also available on Napster & Rhapsody). I hope you enjoy the music - thanks for listening......peace be with you.

Greg White, M.D.
Chief of Orthopaedic Surgery
Phoenix Children's Hospital
4 Car Garage - 4 Car Garage - Soaring Away

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