By Lorraine Ash, Daily Record
10/15/02 - Posted 11:26:18 PM from the Daily Record newsroom

One day last year a high school friend visited Assemblyman Thomas H. Kean Jr., R-Morris. She told him she'd lost her first child, that the child was stillborn, that she hurt because so few people acknowledge her baby existed.

Because of that simple encounter, Kean, son of former Gov. Thomas H. Kean, introduced the Missing Angels Bill, which would offer parents whose child is stillborn the option of getting a Certificate of Birth Resulting in Stillbirth in addition to a Certificate of Fetal Death.

Such bills have been passed in Arizona, Utah, Indiana and Massachusetts, backed by the organizational power of the National Stillbirth Society, founded by stillbirth father Rich Olsen, and The MISS Foundation, founded by stillbirth mother Joanne Cacciatore-Garard.

Both groups have active arms in New Jersey and also are working for passage of similar bills in Pennsylvania, New York, Florida, Iowa, Washington State, Michigan and Mississippi.

Link in the chain

"New Jersey is a link in the chain. More states will start to follow," said Lucy Monahan of Mendham, bereavement counselor for SHARE of North New Jersey, an international perinatal loss support organization. Her son Andrew was stillborn in 1987.

"In the past we parents have turned to bereavement magazines and commercial card producers to have certificates made," she added, "but to have a legal document, I get chills thinking about it. This bill is a credit to the politicians who have embraced stillbirth parents."

Assembly Bill A2335, introduced in May, also is sponsored by Assemblyman Nicholas Asselta, R-Cape May. The measure, which also would make certificates of birth resulting in stillbirth available retroactively, is now in the Assembly's Health & Human Services Committee. Chairwoman Loretta Weinberg, D-Bergen, said she hopes to have a meeting on it by year's end.

"We are behind in dealing with some serious issues, including this one," Weinberg said.

A2335's sister bill in the Senate, S1771, is sponsored by Sen. James Cafiero, R-Cape May.

Missing Angels bills have met with support in all states approached so far, Cacciatore-Garard said. All, that is, except California, which voted one down earlier this year, partially because of opposition from the American College of Obstetricians and Gynecologists in that state.

That opposition was partially pegged on California ACOG's position that a certificate of birth resulting in stillbirth is medically and scientifically unnecessary and that no document is required to validate a woman's motherhood.

Piece of paper

The argument that the certificate is just a piece of paper is one that cuts to the emotional core of the fledgling perinatal and infant loss movement finding its voice in the United States.

"No, we don't need a piece of paper to validate our child's life," said Olsen, of the National Stillbirth Society. "But America does. America needs to pause and remember that all our children matter."

Oct. 15 is national Pregnancy and Infant Loss Remembrance Day, and many stillbirth parents will commemorate their deceased children with special memorial walks. While the walks are healing, parents also want to move beyond commemoration. They want research that will stop stillbirths. They also want acknowledgment that they are parents.

Each year, 26,000 American children are stillborn, most for reasons beyond the reach of science. That is almost nine times the number lost to Sudden Infant Death Syndrome or SIDS. Stillbirth parents sympathize deeply with the fate of SIDS babies, even as they long for the same kind of attention.

On Oct. 1, 2001, Lori Donaldson of Rockaway Township delivered her triplets. Her daughters, Ashlyn and Kaylee, were born. Her son, J.R., was stillborn.

"It was a shock to everybody," the 33-year-old mother said. "My doctor was shocked. The perinatalogist in the delivery room was shocked. The neonatal people were shocked."

The reason? As far as an autopsy shows, J.R.'s umbilical cord and placenta just didn't look right. He didn't get needed nutrients.

Today, the Donaldsons call the video of one of their pregnancy ultrasounds their home movie of J.R. The couple had a painting made of their son from a photograph taken of him in the hospital; it hangs on a wall in their living room next to the latest picture of J.R.'s sisters. In the picture of the girls is a teddy bear, a symbol of the third triplet.

"My son was born, and as far as a lot of people are concerned, he doesn't exist," Donaldson said.

People who know refer to her daughters as "the twins."

Only 20 of the 80 cards she got from well-wishers after the birth mentioned her son.

People who believe life begins at conception act like her son never existed.

People change the subject when she mentions her son's name.

"Part of my closure is talking about my son," Donaldson said. "I can talk about him for hours just from what I know of him being in my uterus and how he used to wrap his feet around my ribs. I love him.

"We baptized my daughters and had a graveside memorial service for J.R. People who attended thanked me for giving them closure, but no one really wants to be a part of mine."

Including the state of New Jersey, according to stillbirth parents. Getting a Certificate of Birth Resulting in Stillbirth if they want one is, for them, important validation that their hopes and dreams, laboring and loving were not in vain. To them, a certificate is acknowledgment that their babies existed, mattered, even though they never breathed the air.

Robert Proto, a stillbirth dad from Upper Saddle River helping to mobilize people to write to Weinberg to get the Missing Angels Bill out of committee, said the certificate is a way the state can help stillbirth parents suffer with dignity.

"Nothing's going to change the insufferable pain. Nothing's going to bring back our children. We know that," he said. "But it's degrading for me to see two original, neat, typed birth certificates, with seals, for my sons, and a photostat of a handwritten fetal death certificate for my daughter. Her name was Alyssa Nicole and the certificate says 'Baby Girl Proto.'

"My God, how much effort does it take to ask what her name was?"

Assemblyman Kean, leading the legislative charge on the Missing Angels Bill, said passage means emotional validation for New Jersey's stillbirth parents, of which there were 764 in 1998. New Jersey already statutorily defines stillborn children as those who die after 20 weeks' gestation.

The Certificate of Birth Resulting in Stillbirth is a way for the state to recognize them as loved children, Kean explained.

"Yes, this is emotional," he said, "and it's practical. Children who are stillborn can die as late as 39 weeks. Oftentimes you have parents who have picked out names as well as everything from cribs to clothes. This is an important bill for those parents who have experienced a stillbirth in their family and, for that reason along, it's an important measure to push."

All the bill does is create an alternate form of documentation, Kean said. It has no bearing on any other issue.

It will have no impact on medical malpractice litigation, in the opinion of William Krais, a partner in the Morristown firm Porzio, Bromberg & Newman who represents patients in medical malpractice cases.

"The bill seems to recognize that perinatal death represents not only the loss of a child, but the loss of status as a parent," he said. "By acknowledging not only the stillbirth's death, but also his or her life, a parent may derive some solace.

"Since New Jersey case law has recognized these factors for at least 14 years, I doubt that this bill will alter the landscape of medical malpractice cases resulting in the delivery of a stillbirth."

To date, New Jersey's American College of Obstetricians and Gynecologists has no position on the Missing Angels Bill here, according to Dr. Joseph Apuzzio, its chairman.

Stillbirth parents are learning to be politically savvy on behalf of their children and, they say, other parents in the future who will unexpectedly grapple with the same profound and endless sadness of having a stillborn child. Parents who, like the activists of today, will never anticipate their fate until life hits them broadside.

"All of a sudden I am the little guy," Donaldson said. "Everybody says you have to fight for the little guy."

Or, in this case, the littlest ones of all.

To learn more

To support the Missing Angels Bill, contact:

- Assemblywoman Loretta Weinberg, D-Bergen, chair, Health & Human Services Committee, (201) 928-0100, AswWeinberg@njleg.org

- Assemblyman Thomas H. Kean Jr., R-Morris, original sponsor, A2335, establishes certificate of birth resulting in stillbirth, (908) 232-3673, AsmKean@njleg.org. Second primary sponsor, Assemblyman Nicholas Asselta, R-Cape May, (856) 691-3004, AsmAsselta@njleg.org

- State Sen. James S. Cafiero, R-Cape May, primary sponsor, S1771, establishes certificate of birth resulting in stillbirth, (609) 522-0462, SenCafiero@njleg.org

To learn more about stillbirth:

- The MISS Foundation, founder Joanne Cacciatore-Garard, www.missfoundation.org

- National Stillbirth Society, founder Rich Olsen, www.stillnomore.org

- Pregnancy and Infant Loss Remembrance Day, www.pregnancyandinfantloss.com

- SHARE Pregnancy & Infant Loss Support, www.nationalshareoffice.com

Lorraine Ash can be reached at lvash@gannett.com or (973) 428-6200