Arizona’s MISSing Angels Bill:
The first Certificate of Birth Resulting in Stillbirth (CBRS) in the United States.
Here is the letter Joanne sent to her legislator, Senator Mary Hartley on April 20, 1999:
Dear Senator Hartley,
With great respect and as a registered voter I feel compelled to write to you regarding an issue that is very important to me. I write speaking for many families in your home state and nationwide. I hope that because of this, you will be prompted to take a little time and please consider what I am about to share with you.
I am writing to tell you about my daughter, Cheyenne Cacciatore. When I first discovered I was pregnant, you can imagine how happy our family was. However, on July 27, 1994, what was supposed to be one of the happiest events of our lives, became the most devastating. During the excruciating pain of labor, my daughter died at 40 weeks gestation, 15 minutes prior to birth. The cause of her death was undetermined. The medical term for this is stillbirth, although she died from S.A.D. Syndrome. This is similar to SIDS, however, it occurs just prior to birth, and it too results in no answers during the postmortem evaluation. I never drank alcohol, did not smoke, and did everything ‘right.’
The statistics are shocking for this type of death. There are more than 35,000 babies ‘stillborn’ in the U.S. every year. In just our state, there are approximately 700 every year.
Since her death, I founded a group for parents who lose infants called M.I.S.S. Our website receives more than 55,000 visitors a year. I also volunteer for the Compassionate Friends, and volunteer for the Crisis Center. In 1996, I began the first grief protocol in our state addressing death and ethics for professionals. I have taught this seminar at more than 500 facilities across the state of Arizona. I also wrote a book about the death of my baby girl called “Dear Cheyenne.” I also began the Kindness Project© in 1997 and was a featured guest on the national talk show, “Leeza Gibbons,” sharing my experience with Cheyenne’s death.
I am requesting your assistance on supporting an issue critical to thousands of Arizona families. In 1994 after Cheyenne’s death, I was awaiting her birth certificate for her baby book. One of the most disenfranchising problems with ‘fetal’ death, or early neonatal death is the lack of tangible memories with the child- thus any memento of the child’s existence is critical in the healing process. Instead, two weeks after Cheyenne’s death, I received a “Certificate of Fetal Death.” I waited ten long months, endured natural childbirth, delivered an eight-pound, 21″ long baby, and still had milk in my breasts for a child whom I buried one week earlier. Yet I received no birth certificate from the state acknowledging my ‘motherhood,’ nor the birth of this child.
I am asking you to support a bill bynamed the MISSing Angels Bill. It would require a simple change from “Certificate of Fetal Death” to “Certificate of Birth resulting in Stillbirth.”
On behalf of thousands of families in our MISS group, I ask you to help us in changing our current protocol. Their births are no different than any other except their parents must leave the hospital without their child. Mothers of stillborn babies must still give birth. For them, the immeasurable physical pain and trauma of childbirth is coupled with the most emotionally traumatic – death.
It is an event that deserves far more respect than it receives.
It is my hope that not only will Arizona meet the needs of parents who suffer such a devastating loss, but also serve as the forerunner for other states to do the same. Perhaps one day the state will deem in appropriate to acknowledge my daughter Cheyenne, and the fact that she lived, she died, and that- even in death, she very much matters.
If it is acceptable to you, I shall contact your office for an appointment to meet with you regarding this, or if you have any further questions prior, you may contact me at the above number. For all you do to help Arizona families, and,
In appreciation of your consideration-
Joanne Cacciatore, RTS Counselor
M.I.S.S. National-Arizona Chapter
Mother of four who walk, and one who soars
“House Bill 2416 – Legislation that would change everything”
Sponsored by Representatives Jarrett, Cooley, Anderson, Foster, Hartley, Carpenter, Johnson, Knaperek, Pearce, and Robson, the bill was first read in the House Chamber on January 16, 2001 and was then assigned to the House Committee on Health who scheduled a public hearing for the bill on January 22, 2001.
ARIZONA STATE HOUSE – 45TH LEGISLATURE – COMMITTEE ON HEALTH DATE: January 22, 2001 – TIME: 1:30 p.m. – ROOM: HHR 4
Committee Members present:
Mr. Hanson, Vice-Chairman
Mr. Huppenthal, Chairman
Chairman Huppenthal called the meeting to order at 1:33 p.m. and attendance was noted by the secretary.
Phyllis Biedess, Director, Arizona Health Care Cost Containment System (AHCCCS)
Marianne Hardy, Assistant Legislative Analyst
Marilyn Jarrett, Representative, District 21
Rose Conner, Assistant Director, Arizona Department of Health Services (ADHS)
Joanne Cacciatore, Peoria, representing herself
Marjorie Mead, Lobbyist for the National Organization for Women (NOW)
Paula Mikkelson, representing herself
Katy Muncaster, Legislative Intern
Judy Bernas, Associate Director for Public Affairs, University of Arizona (UofA) Health Sciences Center
(Chairman Huppenthal also recognized persons present who did not speak)
CONSIDERATION OF BILLS:
H.B. 2416, certificates of stillbirth – DO PASS AMENDED.
Marianne Hardy, Assistant Legislative Analyst, summarized H.B. 2416 which establishes a certificate for births resulting in stillbirth. Mrs. Binder asked if the bill makes the certificate mandatory. Ms. Hardy affirmed that it does.
Representative Marilyn Jarrett, District 21, sponsor, explained that she introduced the bill at the request of several young women seeking a certificate to acknowledge the stillborn birth of a child. She explained that Arizona Department of Health Services (ADHS) requested that it be mandatory so that the certificate would be available to everyone.
Mrs. Binder voiced concern that the mandatory provision could prove to be detrimental to a young woman who did not want anyone to know about a stillbirth.
Ms. Hardy pointed out that under current law a fetal death certificate is required for a death after twenty weeks gestation.
Mr. Miranda asked if the wording of the bill could be changed from “shall” to “may.” Mrs. Jarrett said while she has no objection to the change, ADHS may demur.
Rose Conner, Assistant Director, Arizona Department of Health Services (ADHS), explained that she has met with several parents about the issue, some of whom feel strongly that there is a need for an alternative to the fetal death certificate, and some of whom are neutral on the subject. She said ADHS is planning to issue an acknowledgement of stillbirth for those parents who ask for one.
Discussion followed on the twenty-week requirement in current law, and whether the bill is needed if ADHS has made the decision to issue a certificate.
Joanne Cacciatore, Peoria, representing herself, explained that under current law a death prior to twenty weeks gestation is considered a miscarriage, while one after twenty weeks is classed as a stillbirth, for which a fetal death certificate is required. She described her own distressing experience, and pointed out that while she received a certificate of fetal death, and state law required that the baby be buried, there was no recognition of the birth. As a result, she said, many parents would like the birth, as well as the death, to be recognized.
Mrs. Allen said she shared the same experience, and asked Ms. Cacciatore if replacing “shall” with “may” would be acceptable to her. Ms. Cacciatore responded that she would prefer to require the certificate in statute rather than leaving it to the discretion of ADHS.
Mrs. Binder cautioned that some women may not want to be reminded of a stillbirth, such as in the case of rape.
Chairman Huppenthal suggested that the bill could state that ADHS “shall” offer the certificate, but that a woman “may” accept.
Marjorie Mead, Lobbyist for the National Organization for Women (NOW), speaking in opposition to H.B. 2416, said she believes the bill is unnecessary and does not advance the interests of the state. She pointed out that live birth certificates are essential to society, while death certificates are not. Ms. Mead contended that elected officials should not be in the business of providing grief counseling, but should focus on solving the needs of the living.
Paula Mikkelson, representing herself, a bereaved parent, related the tragic loss of her only child through stillbirth. She pointed out that the state of Arizona requires that parents recognize their children through death, and some wish to recognize the birth as well.
Mr. Hanson moved that H.B. 2416 do pass.
Ms. Hardy explained a proposed verbal amendment.
Mr. Hanson moved that H.B. 2416 be amended as follows:
Page 1, line 7, strike “ESTABLISH” insert “PROVIDE”
Line 8, after “STILLBIRTH” insert “UPON REQUEST OF PARENT OR PARENTS”
Line 16, after “CHILD’S” insert “PARENT OR”
The motion carried.
Mr. Hanson moved that H.B. 2416 as amended do pass.
The motion carried by a roll call vote of 10-0-0-0.
Chairman Huppenthal noted that Susan V. Charlton, representing herself, is present in support of the bill.
“February 12, 2001 – House Bill 2416 passes House”
On February 12, 2001, HB 2416 passed out of the House chamber and was transmitted to the Senate chamber.
In the Senate, the legislation was read for the first time and assigned to the Senate Committee on Health on Feburary the 13th. The Senate Committee on Health scheduled the legislation to be heard on March, 20, 2001.
“March 20, 2001 – Senate Health Committee considers HB 2416”
ARIZONA STATE SENATE – 45TH LEGISLATURE – MINUTES OF COMMITTEE ON HEALTH DATE: March 20, 2001 – TIME: 1:30 p.m. – ROOM: SHR 2
CHAIRMAN: Senator Gerard
VICE CHAIRMAN: Senator Nichols
ANALYST: Jason Bezozo
COMMITTEE SECRETARY: Carol Dager
INTERN: Meghann Brennan
ASSISTANT ANALYST: Kathy Seeglitz
Senator Cirillo – present
Senator Guenther – excused
Senator Hartley – present
Senator Hellon – present
Senator Solomon – present
Senator Verkamp – excused
Senator Nichols, Vice Chairman – present
Senator Gerard, Chairman – present
Chairman Gerard called the meeting to order at 1:45p.m., and attendance was taken.
CONSIDERATION OF BILLS
HB 2416 -Certificates of Stillbirth – DO PASS
Meghann Brennan, Senate Health Committee Intern, explained that HB 2416 requires the registrar of vital statistics to establish a certificate of birth resulting in stillbirth for each fetal death occurring after 20 weeks of gestation.
Joanne Cacciatore, citizen, quoted from Mark Twain in 1892 “favored above kings and emperors is the stillborn child.” She said that she wished that stillbirth was respected in this manner in 1994. She explained that her fourth daughter died during childbirth, full term, on her due date. There was no explanation for her cause of death. There was a post mortem evaluation and no one could give her any answers about why the baby died. She was 8 pounds and more that 21 inches long. She said that her milk came in a week after she buried her baby and for ten months she had milk in her breasts to feed a child who had died. Approximately two weeks after her death, she was waiting for her birth certificate to arrive to put in her baby book as she had done with her previous three children. She said that when she opened the envelope that came from the vital statistics office it said certificate of fetal death. She stated that she was taken aback by it and did not want to include that in her book. She said that she called the vital statistics office to find out when she would be receiving the birth certificate, the commented to her was “you did not have a baby, so you do not get a birth certificate.” She stressed that she did in fact give birth to a baby.
Ms. Cacciatore related that in 1999 there were more than 600 families who endured this tragedy in Arizona, with approximately 39,000 in the United States each year. This affected everyone in her family and friends. Historically, they share this tragedy with several presidents, John Quincy Adams, Rutherford Hayes, John F. Kennedy, as well as the Hemmingways. She noted that a sociologist with the University of Nebraska did an intensive study of this during the early 1980s, researching 500 families asking them questions about their experience. They all said that it is horrible not having any validation such as a birth certificate after having given birth. This is a long overdue change that is needed. She emphasized that women who endure nine or ten months of pregnancy and the difficulty of childbirth because of the reward at the end. However, with a stillborn baby there is no reward. Further, the fetal death certificate is a cruel and impressive reminder of a woman’s body’s failure to produce what it is suppose to. Other countries such as Australia, New Zealand, Norway, Canada, and Ireland currently issue certificate of births for children who are stillborn. She said that she believes that HB 2416 is the right thing to do for Arizona women and their families. It is a long overdue change. She quoted from Martin Luther King, “It is always the right time to do the right thing.”
Senator Cirillo moved HB 2416 be returned with a DO PASS recommendation. The motion CARRIED with a roll call vote of 6-0-1.
Chairman Gerard noted the following were present in support of the bill: Karen Wondra, citizen; Paula Mikkelson, citizen; Delynn Jones, citizen; Timothy J. Dougherty, citizen; Nicole Dougherty, citizen; and Tammy Harmonte, citizen.
Joanne’s testimony notes before the March 20, 2001 Senate Health Committee.
Greetings Mr. Chairman and Health Committee Members,
My name is Joanne Cacciatore. I come to you today in hopes of securing your support for an very important piece of legislation for women and their families.
In 1892, American Author and Philosopher, Mark Twain said, “Favored above Kings and Emperors is the stillborn child.” I wish that stillbirth and the experience of having to deliver a dead baby was respected in this manner back in 1994 when my fullterm baby girl died during childbirth.
(I told my personal experience with Cheyenne’s death here)
This tragedy strikes everywhere. According to the Center for Positive Outcomes in Pregnancy in Washington DC, there are 39K stillbirths in the US every year. In 1999, there were more than 600 in Arizona. This has affected our neighbors, my husband’s friends within the fire dept, even your fellow legislators. Historically, we share this horrific experience with John Quincy Adams, Rutherford Hayes, Ernest and Pauline Hemingway, and John and Jackie Kennedy, whose stillborn daughter is buried with her parents and siblings.
Dr. John DeFrain of the Univ of Nebraska did an intensive research study of stillbirth in the early 80’s. Many of the hundreds of participants expressed deep pain and anxiety about the lack of validation for the experience of birth. I asked myself while re-reading this study the other day, “Why didn’t they do anything about it then?”
I don’t know. But here I stand before you today, asking you to make this right.
Childbirth is a unique physiological experience for women. It is such an important event that we celebrate it every year in a ritual called the ‘birthday.’ Suzanne Arms, internationally acclaimed author and photojournalist said of childbirth: Birth is an inherently successful process that is a major social, economic, political, spiritual, and environmental issue.
Ask any woman why she would endure the pain and agony of giving birth and she will tell you because of the ‘reward’ at the end…it is ‘all worth it,’ we frequently hear. But what about the silent births- the women who get no reward for all their hard work…
Arizona, as all other states in the US, currently issues the “Certificate of Fetal Death” for stillborn infants. This document is a cruel and oppressive reminder of a woman’s failure to produce a healthy living baby. Women who endure stillbirth must still give birth- a physiological process that includes great physical pain, incalculable emotional investment, postpartum symptomology, and financial sacrifice.
We are asking you to change this. Women deserve a birth certificate for their babies. Other countries such as Australia, New Zealand, Norway, Canada, and Ireland currently issue birth certificates for stillborns. It is time for the United States to join these countries in their support of women.
HB2416 is the right thing to do for Arizona women and their families. It is a change long overdue. We cannot issue merely a death certificate to the women who give birth to stillborns. The birth, too, must be acknowledged in a compassionate and sympathetic way. This is the right and just thing to do. And as Martin Luther King, Jr. said, “It is always the right time to do the right thing.”
“March 28, 2001 – House Bill 2416 passes Senate”
On March 28, 2001, HB 2416 passed out of the Senate chamber and was transmitted back to the House chamber.
On March 29, 2001, the legislation was then sent to Governor Jane Dee Hull – who signed the bill into law on April 4, 2001.
The effective date of the new law would be August 9, 2001.
The bill was subsequently scheduled for a Public Signing Ceremony on June, 11, 2001.
Read our official press release about Arizona’s groundbreaking bill.