This journal has been organized in 'blog' fashion,
with the most recent entry on top.
These pages are maintained by John
Nevels - please let me know if you have any questions.
| Today is December 15, 2005.
On December 12, Carolyn and I were invited to Senator
Zaffirini's office at the state capitol building in Austin. A picture (or two) is worth a thousand words:
You can get a CBRS for your child by visiting: http://www.dshs.state.tx.us/vs/field/stillbirth.shtm |
| On June 9, 2005, Governor Rick Perry signed Senator
Judith Zaffirini's Senate Bill 271 (The Texas MISSing Angels Bill) into
law.
Starting on September 1, 2005, parents of stillborn children in the state of Texas will be able to request and receive a Certificate of Birth Resulting in Stillbirth for any stillborn child they have had, regardless of the date of stillbirth. Words cannot convey how thankful we are to Senator Zaffirini and her Legislative Director, Mr. Larkin Tackett, for their tireless support and hard work. If you have a moment - please take the time to thank them - for they are truly worthy of our praise. You can send an e-mail to Senator Zaffirini HERE. Representative Lon Burnam sponsored the bill on the House side.. you can send him an e-mail HERE. The official History of Senate Bill 271 can be found here: At present time, we are waiting to hear from Austin on if (and when) a public bill-signing ceremony will take place. As soon as we hear - we'll get the word out! |
| On May 13, 2005 - Senate Bill 271 was heard by the
House Committee on Public Health.
Testimony in favor of the measure was given by Becky Ellis, John Nevels, and Brenda Nevels. Carolyn Nevels acted as a witness in support of the measure. Of the committee members present (two were absent), a unanimous decision was made to favorably report the bill to the LOCAL & CONSENT CALENDERS committee. This is considered good news because passage from this committee will most likely mean that SB 271 will go to the House floor for a full vote within a few days. If you'd like to see the public hearing, it's available on the internet. Make sure you have RealPlayer installed (it's free and easy to find on the internet if you don't already have it) and then click here: http://www.house.state.tx.us/fx/av/committee79/50513p33.ram. NOTE: There were 3 bills heard before Senate Bill 271. This clip is only about 1 hour and 15 minutes in length. |
| On March 15, 2005 - Senate Bill 271 was heard by the
Senate Health and Human Services Committee. Upon stating the intent of
the legislation, Senator Zaffirini also stated that a committee
substitute was being offered that would only be technical in nature and
would not impact the original intent of the bill.
Along with my oral testimony, the committee heard from stillbirth mother Amanda Turner, and two other stillbirth parents, Kristi & Howard Davis. Also testifying on the bill was a young lady named Candice Lewis from the Austin branch of the ACLU. Her position was that she felt it was unfair that a woman who might have to give birth to a dead infant at 19 weeks and 5 days would not be able to receive a CBRS. She wanted 'viability language' written into the legislation. In 1987, a Texas statute defined viability as follows: "Viable means the stage of fetal development when, in the medical judgment of the attending physician based on the particular fact of the case, an unborn child possesses the capacity of live outside its mother's womb after its premature birth resulting from any cause." The 1987 bill and current statute also uses "good faith according to the physician's best medical judgment." So, her suggestion was that the state consider offering a bill that replaces the 20 week gestational age with "viability", as defined in the Medical Practice Act, determined by the attending physician acting in good faith and using his/her best medical judgement. One of the Senators on the panel agreed with her and offered to submit an admendment that would redefine stillbirth as a doctor's decision of viability alone. Senator Zaffirini came out against the admendment stating that the families who have had stillborn children have been waiting long enough, that she and her staff had made every effort to have the legislation be controversy-free, and that while she would accept language that made a compromise - such as "a doctor's determination of viability OR 20 weeks", she would not accept viability language alone. The Senator with the viability language then withdrew his proposed amendment. All of the Senators present then voted that the committee substitute for Senate Bill 271 be reported favorably to the Senate. Afterwards, many of the Senators on the panel met with us, expressed their sympathy, and told us they would do whatever they could do to make the CBRS happen for us. If you'd like to see the public hearing, it's available on the internet. Make sure you have RealPlayer installed (it's free and easy to find on the internet if you don't already have it) and then click here: http://www.senate.state.tx.us/avarchive/ram.php?ram=00002175. NOTE: Once you get the clip up and running, the part regarding Senate Bill 271 starts at about 1:40:00 on the 2:14:13 length clip. |
| On March 14, 2005 - Larkin sent me an email with one
question: Why does the bill define a stillbirth at twenty weeks? I responded: |
| The bill specifies 20 weeks because that's the critera that
is used when a Certificate of Fetal Death is issued.....
Texas Administrative Code Title 25 Chapter 181.7 (a) A certificate of fetal death shall be filed for any fetus weighing 350 grams or more, or if the weight is unknown, a fetus aged 20 weeks or more as calculated from the start date of the last normal menstrual period to thedate of delivery. (b) A certificate of fetal death shall be considered properly filed: (1) when all of the items thereon have been satisfactorily and definitely answered; and (2) when the certificate has been presented for filing to the local registrar of the registration district in which the fetal death (stillbirth) occurred or the fetus was found. A certificate of fetal death (stillbirth) shall be filed with the local registrar within five days after the date of fetal death (stillbirth). So.....the state should also offer the parents the opportunity to receive a CBRS based on the same '20 week' criteria. |
| Also on March 14, Larkin asked: 1. Why not replace the "20 weeks" definition with "after viability?" 2. Why not issue a seperate "Certificate of Birth Resulting in a Miscarriage?" I responded: |
| 1. Because we have a 'Certificate of Fetal Death' based on 20
weeks. We don't need to get doctors involved in making viability
decisions when the state has already made it clear that our child has
died and has issued us a 'Certificate of Fetal Death'. We want
recognition of the birth event.
2. Stillbirth and Miscarriage are two different events entirely. There is no vital records registration required when a child is miscarried. Our issue is that whenever a 'Certificate of Fetal Death' is issued - a CBRS should be offered. |
| On March 11, 2005 - Larkin sent an e-mail with 2
questions. 1. Why not have the fetal death certificate and CBRS be one certificate? 2. Will there be problems with fraud for a CBRS that is left blank? I responded: |
| 1. Why not have the fetal death certificate and CBRS be one
certificate? Currently, the specific cause of death data placed on Fetal Death Certificate is collected by the state in order to meet CDC/National Center for Health Statistics requirements. It wouldn't be a positive recognition of the birth of a child (whether 'live' or 'stillborn') if the parent had to look at the cause of death (or the contributing factors to that cause of death) on the combination certificate. It makes sense that if the state is mandated to issue a 'death certificate' that the state should issue a 'birth certificate' as well. 2. Will there be problems with fraud for a CBRS that is left
blank? |
| On March 10, 2005 - I heard from Larkin that Senator Van de Putte was interested in signing on to SB 271 as a co-author. Also, we heard on this date that the public hearing might be on March 15th (later in the day, it was confirmed, we were set for the 15th). |
| On March 9, 2005 - Larkin asked if I could provide him with the full article from the Indianapolis Star that I had previously cited - so I did. A copy of it can be found here. |
| On March 7, 2005 - In thinking more about the 'issue' that Planned Parenthood had created I did some research and emailed Larkin with an idea: |
| Larkin, The Indianapolis Star ran an article titled "Bill allowing birth certificates for stillbirths advances" on January 22, 2002. In that article, Dinah Farrington, vice president of public policy for Planned Parenthood of Great Indiana, said her group would not oppose Indiana's legislation because... "The proposed certificate would not be proof of a live birth." If we added the language similar to that into Senate Bill 271 - would it be enough to keep them happy? |
| Larkin then asked if I could provide him a copy of Indiana's law - so I did: |
| Indiana Code 16-37-1-8.5
Certificate of birth resulting in stillbirth; required contents of certificate Sec. 8.5. (a) Upon request by a parent of a stillborn child, a local health officer shall provide to the parent a certificate of birth resulting in stillbirth. (b) A certificate of birth resulting in stillbirth provided under subsection (a) must contain the following: (1) The caption "Certificate of Birth Resulting in Stillbirth". (2) A space for the name of the stillborn child. (c) A certificate provided under this section is in addition to a certificate of stillbirth registration provided under section 8 of this chapter. (d) For purposes of federal, state, and local taxes, the certificate provided under this section is not proof of a live birth. (e) A local health department may charge the same fee for a certificate provided under this section as the fee charged for a certificate of birth registration provided under section 8 of this chapter. (f) A certificate of birth resulting in stillbirth must be issued on tamper resistant paper. As added by P.L.13-2002, SEC.1. |
| On March 4, 2005 - I received word from Larkin that Planned Parenthood had some issues with the language in Senate Bill 271 and they were proposing changes. |
| Here is the language proposal I received from Planned
Parenthood folks. Your thoughts? Thanks, -----Original Message----- In 1987, Texas passed a ban on third trimester abortions if the fetus was viable. The bill amended the Medical Practice Act of Vernon's Texas Civil Statutes. Sen. Zaffirini was already a member of the Texas Senate then. You may want to look up the entire statute, but we generally concluded yesterday that it would be best to use some of the language from that existing statute to frame the stillborn birth certificate bill. Specifically, instead of using 20 weeks or any other number, we suggest that "after viability" be used. The 1987 statute defined viability as follows: "Viable means the stage of fetal development when, in the medical judgment of the attending physician based on the particular fact of the case, an unborn child possesses the capacity of live outside its mother's womb after its premature birth resulting from any cause. However, the term does not apply to a fetus whose biparietal diameter is less than 60 millimeters." The 1987 bill and current statute also uses "good faith according to the physician's best medical judgment." Our suggestion is that you consider offering a bill with that replaces the 20 week gestational age with "viability", as defined in the Medical Practice Act, determined by the attending physician acting in good faith and using his/her best medical judgement. |
| Carolyn and I were both shocked. After a lot of thought (and after receiving some guidance from folks I really trusted) I responded to Larkin on Saturday, March 5, 2005: |
| Larkin, I’ve given this a lot more thought – and I’m willing to provide you alternate definitions of “stillbirth” but I am not willing to muddy our legislation with definitions of “viability”. It is certainly not my desire to put you in the awkward position of placing Senator Zaffirini in the middle of a controversial firestorm. I have to believe my son would have wanted me to stand up for him. Let us not hinge the availability of this certificate – a certificate that can provide comfort and help heal grieving hearts - on a doctor’s decision of viability. In looking at the law Maryland passed (link: http://198.187.128.12/maryland/lpext.dll/Infobase/2b8ca/2bae3/2bb38/2bc4e?fn=document-frame.htm&f=templates#LPTOC1 ) I found language that I would be willing to use as a substitute: “The Department shall make available a certificate of birth resulting in stillbirth to the parent or parents of a stillborn child for whom a fetal death was registered.” Maryland (link: http://198.187.128.12/maryland/lpext.dll/Infobase/2b8ca/2bae3/2bb38/2bb39?fn=document-frame.htm&f=templates#LPTOC1 ), defines “fetal death” as: “"Fetal death" means death of a product of human conception, before its complete expulsion or extraction from the mother, regardless of the duration of the pregnancy, as indicated by the fact that, after the expulsion or extraction, the fetus does not breathe or show any other evidence of life, such as heart beat, pulsation of the umbilical cord, or definite movement of voluntary muscle.” Iowa (link: http://www.legis.state.ia.us/IACODE/2003SUPPLEMENT/144/1.html ) defines “fetal death” as: “Fetal death" means death prior to the complete expulsion or extraction from its mother of a product of human conception, irrespective of the duration of pregnancy. Death is indicated by the fact that after expulsion or extraction the fetus does not breathe or show any other evidence of life such as beating of the heart, pulsation of the umbilical cord, or definite movement of voluntary muscles. In determining a fetal death, heartbeats shall be distinguished from transient cardiac contractions, and respirations shall be distinguished from fleeting respiratory efforts or gasps.” Minnesota (link: http://ww2.revisor.leg.state.mn.us/arule/4601/0100.html ) defines “fetal death” as: “Fetal death. "Fetal death" means death of a product of human conception before the complete expulsion or extraction from its mother, irrespective of the duration of pregnancy, that is not an induced termination of pregnancy. The death is indicated by the fact that after expulsion or extraction, the fetus does not breathe or show any other evidence of life, including beating of the heart, pulsation of the umbilical cord, or definite movement of the voluntary muscles. Heartbeats are to be distinguished from transient cardiac contractions. Respirations are to be distinguished from fleeting respiratory efforts or gasps.” Could any of these definitions be used for “stillbirth” in our Senate Bill 271 – and therefore keep everyone happy? There’s no mention of gestational age. Larkin, even though my wife Carolyn spent 18 hours in pain to bring our son into this world, there was no acknowledgement of the birth of my son. The vast majority of the people I have told that to were absolutely shocked. In working out how a parent would receive the CBRS if the stillbirth occurred before the law was enacted, we talked about the fact that having the Certificate of Fetal Death is the key – it would most likely be the ‘qualifying criteria’ that the state is going ask for when a parent requests a CBRS. What more would ‘Planned Parenthood’ ask a grieving parent to do? Track down a doctor and get his opinion on viability? What if the doctor is no longer in practice, no longer living, etc? How much more difficult must this be made to appease them? How much more grief would they have us endure? We have come too far to have this thing turned upside-down on us now. Please – let’s stay the course and try to make this happen the way we have worked so hard to have it happen. Let’s leave viability out of it and make sure there’s nothing ‘commemorative’ about it. It’s just too important to let it get screwed up. |
| On February 26, 2005 - Adel, our precious daughter,
died.
We learned that we were pregnant in January 2005. Adel left us at 12:15 in the morning on February 26. We'll miss you always, Adel. |
| On February 24, 2005, Larkin sent me an email stating that Senator Zaffirini was going to request to hear SB271 (in committee) on March 8, 2005. |
| On February 16, 2005, I began reaching out to the
membership of the MISS Foundation, my family, friends, and co-workers.
I created a web page that included a sample letter (much like the one
dated February 10 above) and the mailing address of all of the members
of the Senate Committee on Health and Human Services. The money we
spent on postage was well worth it. I wanted to make sure that the
members of the committee were aware that there was, indeed, public
support for the bill.
At this point in time - Senate Bill 271 had already been... It was rapidly approaching the time when a public hearing would take place - and Carolyn and I wanted to be there. |
| On February 11, 2005 - Larkin responded to my February 10 email: |
| John, Where does the reference in your letter to twenty weeks in other state regulations come from? Thanks, |
| I responded on the same day: |
| Larkin, I'm glad you asked! See: http://www.cdc.gov/nchs/data/misc/itop97.pdf It's slightly different from state to state (and reporting area to reporting area), but the most widely accepted definition of 'Stillbirth' (a/k/a Fetal Death) is: ''Fetal death'' means death prior to the complete expulsion or extraction from its mother of a product of human conception, irrespective of the duration of pregnancy and which is not an induced termination of pregnancy. The death is indicated by the fact that after such expulsion or extraction, the fetus does not breathe or show any other evidence of life, such as beating of the heart, pulsation of the umbilical cord, or definite movement of voluntary muscles. Heartbeats are to be distinguished from transient cardiac contractions; respirations are to be distinguished from fleeting respiratory efforts or gasps. Forty-one areas use a definition very similar to this definition, thirteen areas use a shortened definition of fetal death, and three areas have no formal definition of fetal death. Current fetal death reporting requirements The 1992 Revision of the Model State Vital Statistics Act and Regulations (1) recommends the following reporting requirement for fetal death: ''Each fetal death of 350 grams or more, or if weight is unknown, of 20 completed weeks gestation or more, calculated from the date last normal menstrual period began to the date of delivery, which occurs in this state shall be reported within 5 days after delivery to the (Office of Vital Statistics) or as otherwise directed by the State Registrar.'' Eleven areas report all periods of gestation as a fetal death; 25 areas report gestation periods of 20 weeks or more; 13 areas specify birthweight of 350 grams or more or 20 weeks of gestation or more; 1 area specifies 20 weeks or more or birthweight of 400 grams or more; 1 area specifies 20 weeks or more or birthweight of 500 grams or more; 1 area specifies birthweight of 350 grams or more; 3 areas specify birthweight of 500 grams or more; 1 area specifies 16 weeks of gestation or more; and 1 area specifies 5 months of gestation or more. |
| Also on February 11, 2005 - I responded to Colin's February 9 email: |
| Colin, Sorry not to have gotten back with you sooner. If you'll give me about 2 weeks advance notice, I can pretty much be wherever you need me to be. I'm very happy that Rep. Burnam has filed HB335, and that he has agreed to become the House sponsor for SB271 - but I'm a little concerned that the language is not quite the same. SB271 will make it the state's responsibility to offer the Certificate of Birth Resulting in Stillbirth (instead of relying on the parent to know that it's available before the event occurs). SB271 also provides that a parent who has had a stillborn child prior to the enactment of the legislation will be able to request the certificate upon providing sufficient documentary evidence of the event. Please let me know your thoughts. |
| Subsequently, I was told by Colin that any differences between House Bill 335 and Senate Bill 271 would be changed with what is known as a "Committee Substitute". |
| On February 10, 2005 - I sent the following message to Larkin: |
| Larkin, Per our recent telephone conversation, attached is the letter I intend to send to the Senate Committee Chairs and Members. Please review and let me know your thoughts. If something needs changing - please just let me know, okay? I just want your opinion on how I can get this done the right way so we can be successful. Thanks, John |
| Here is the text from the letter that was attached to the e-mail: |
| A letter to the Senate Committee on Health and Human
Services in support of SB-271, which requires the State of Texas to
issue Certificates of Birth Resulting in Stillbirth (CBRS) to the
parent of a stillborn child if the parent so requests.
February 10, 2005 The Honorable Jane Nelson The Honorable Kyle Janek Dear Committee Chair Nelson and Committee Vice Chair Janek, We write today to urge your support for Senate Bill 271 (SB-271), introduced by Senator Judith Zaffirini (D-Laredo). Under this bill, parents whose children are stillborn would be given the option to receive a "Certificate of Birth Resulting in Stillbirth". Your consideration of this legislation sends a message of hope and compassion for bereaved parents who suffer the devastating loss of a child by stillbirth. Current state policies mandate that when a woman loses a child after 20 weeks of gestation, even though in the vast majority of cases she will have to endure the physical and emotional pains of childbirth, the only certificate available to the parents is a "Certificate of Fetal Death". By officially acknowledging our stillborn children in a positive manner, our state will provide a level of comfort and support that has been missing. However briefly, our state's stillborn children lived and died. Even in death, all of these children very much matter to all those who continue to love them, continue to grieve for their loss, and continue to wish to honor their memory. We respectfully request your "YES" vote on SB-271. Sincerely, John & Carolyn Nevels cc: Members, Senate Committee on Health and Human Services |
| On February 9, 2005 - I received this message from Colin Leyden (Representative Burnam's aide): |
| As you are probably aware, Senator Zaffirini and Rep. Burnam
have both filed the same legislation to establish a certificate of
birth resulting in stillbirth. Our bill has been referred to the Public
Health committee in the House of Representatives. We will request a
hearing, and need to line up our witnesses to testify for the bill.
What is your availability for testifying on behalf of the bill?
Senator Zaffirini will also be moving her bill through the Senate process. Rep. Burnam has agreed to defer to the Senator's bill, at which time he would become the House Sponsor for her bill, if and when it makes it over to the House. We feel it is important to keep the separate bills moving through both chambers, just to be sure. Please call when you get the chance so we can discuss further. Thanks, |
| On January 25, 2005 - I received this message from Larkin: |
| Today, Senator Zaffirini filed SB 271, which requires the
State of Texas to issue Certificates of Birth Resulting in Stillbirth
(CBRS) to the parents of a stillborn child if the parents so requests.
I'll be in touch. Thanks, Larkin Tackett |
| A copy of Senate Bill 271 - as it was first introduced - can
be found HERE. (Adobe Acrobat Reader may be
required).
Subsequently, I asked Larkin what I should be doing next. He suggested that I send a brief letter to each of the Senate Health & Human Services Committee members - asking them for their support on Senate Bill 271. It was also suggested that I have friends and colleagues do the same. |
| On January 24, 2005 - after discussing some of the above issues with Joanne Cacciatore, I sent Larkin the following: |
| Here's something I just learned this from the founder of the
MISS Foundation in Arizona (Joanne Cacciatore - who pioneered this
legislation there) and wanted to pass it to you: "we've never experienced a circumstance in Arizona where a parent requested a CBRS and did NOT name their child at time of birth. Never. Never since 2001 and more than 2,000 CBRS issued." |
| On January 21, 2005 - I sent the following comments to Larkin so that he could work with the DSHS and reach a consensus before filing: |
| Define it however it needs to be defined - but the
certificate should remain titled "CERTIFICATE OF BIRTH RESULTING IN
STILLBIRTH". It is of paramount importance that the words "Certificate
of Birth" are in the title of this certificate. Anything else (or
anything less) is a Death Certificate - and that is *not* what I want.
If they give it the title "Certificate of Stillbirth" - that's a definite deal-breaker (as stated above). Moving on to the certificate 'name amending' thing... Make no mistake; the birth of my son - the event itself - was tremendously emotional and difficult. I can fully appreciate and understand why parents may not want to name their child at the time of the birth. My opinion is that if a parent did not have the desire (or emotional wherewithal) to name his or her child at the time of the birth, but now, months or years later they wish to do so, (regardless of whether or not they are trying to obtain a CBRS), the state should do *whatever it takes* to make it possible for a parent to name their heretofore un-named child. I'm relatively confident that the beneficial psychological aspects of naming a child are documented. |
| On January 19, 2005 - Larkin sent me the following from the DSHS: |
| Here are the agency comments:
Sec. 192.0022 (b) (2) and (3) - References to Bureau of Vital Statistics - should be changed to reflect the new name under the Texas Department of State Health Services as "Texas Department of State Health Services Vital Statistics Unit." Sec. 192.0022 (a) - Definitions on "stillbirth" - the definition in the draft bill may conflict with the National Center for Health Statistics (NCHS) definitions for "live birth" versus "fetal death or stillbirth." These NCHS definitions have been adopted by the World Health Assembly and are recommended for use in the United States. I have a copy of these definitions and will fax them to you separately. As Senator Zaffirini moves forward on this bill, DSHS staff will continue to research the definitions. Sec. 192.0022 (c) - Name on Certificate of Stillbirth - because it would be necessary to corroborate prior stillborn deaths through existing fetal death certificates, any name placed on the "certificate of birth resulting in stillbirth" would need to be the same name indicated on the fetal death record. According to the Vital Statistics staff, many of the past fetal death registrations do not have names listed. If the requesting parents want a name listed where no name currently exists, then The fetal death record would have to be amended. It is important that the "certificate" be linked to the fetal death record so there can not be different names on both documents. Parents should only be able to supply a name at the time of the fetal death or if no exists on a previously filed fetal death record. |
| On January 7, 2005 - Representative Lon Burnam filed House Bill 335. I found this strange and interesting. It was an almost identical copy to the first draft that Larkin had sent to me back in November - but no other changes had been made to it. I was later told by Larkin that this would be okay - and we had little to worry about. |
| On January 6, 2005 - I was sent yet another draft to review and comment on. The text is transcribed below - but you can also access it by clicking HERE. (Microsoft Word may be required). |
|
AN ACT BE IT ENACTED BY THE LEGISLATURE OF THE STATE OF TEXAS: SECTION 1. Subchapter A, Chapter 192, Health and Safety Code, is amended by adding Section 192.0022 to read as follows: Sec. 192.0022. CERTIFICATE OF BIRTH RESULTING IN STILLBIRTH. SECTION 2. Not later than the 60th day following the effective date of this Act, the bureau of vital statistics of the Department of State Health Services shall prescribe the form and content of a certificate of birth resulting in stillbirth and specify the information necessary to prepare the certificate as required by Section 192.0022, Health and Safety Code, as added by this Act. SECTION 3. A parent may request the bureau of vital statistics of the Department of State Health Services to prepare and issue a certificate of birth resulting in stillbirth without regard to whether the fetal death occurred on, before, or after the effective date of this Act. SECTION 4. This Act takes effect September 1, 2005. |
| It was perfect. The only thing was - Larkin wanted to make sure that the DSHS completely agreed with the language in the bill before it would be filed in the Senate. |
| On January 4, 2005 - Larkin wanted to make sure that I was okay with the renaming of the certificate from "Birth Certificates for Birth Resulting in Still Birth" (BCBRS) to "Certificates of Birth Resulting in Stillbirth" (CBRS). My response was affirmative - but I reminded him that anything less would not be acceptable. |
| On January 3, 2005 - I was send a another draft to review and comment on. The text is transcribed below - but you can also access it by clicking HERE. (Microsoft Word may be required). |
|
AN ACT relating to the issuance of a birth certificate for a birth resulting in stillbirth on request of a parent. BE IT ENACTED BY THE LEGISLATURE OF THE STATE OF TEXAS: SECTION 1. Subchapter A, Chapter 192, Health and Safety Code, is amended by adding Section 192.0022 to read as follows: Sec. 192.0022. BIRTH CERTIFICATE FOR A BIRTH RESULTING IN
STILLBIRTH. |
| It met every expectation. |
| On December 20, 2004 - I heard back from Larkin - he had feedback from DSHS and wanted to know if I had any questions: |
| Here are the initial thoughts from DSHS staff:
Basically, there is not any concern about giving parents information about the availability of a certificate at the time of stillbirth from the time of enactment of such legislation. This would be conducted by the hospital and/or funeral home staff as part of the other information the parents receive about the stillborn fetal death certificate. Information could be included in the training materials and process that are conducted by DSHS. Giving them information about the availability of a special certificate may, in fact, provide some measure of solace. However, there is concern that going back to parents whose stillbirth occurred five years ago is not the same situation at all. As for the retroactive availability of the certificate or "grandfathering"...The grandfathering concept sounds good in principle, but program and legal staff view this as potentially problematic and recommend against inclusion in the bill language. How will parents of stillborn children know about this after the fact? If DSHS is mandated to contact them, there is concern that this would likely result in the reopening of old wounds and a lot of unintended heartache. This could create some unneeded ill will between the State and these parents. Yet, we understand that there are some parents who would want this certificate regardless of the time that has passed. And if DSHS is required to do a mass notifcation, it would obviously increase our short-term expenses and effort. Due to the nature of how records of fetal death certificates have been kept in Texas over time...if this bill is retroactive, it will be labor intensive and time consuming to produce a certificate of birth that resulted in a stillbirth if there was a large demand from years past. There is concern that requiring an affirmative notification of a parent of the availability of a certificate who experienced a stillborn birth prior to the enactment of the law could present some logistical and resources burdens, not to mention potential heartache for the parents. In addition, many of the fetal death registrations do not have names; and would also have to be amended for names to be added. If a fetal death certificate indicates a name, such as "Baby Smith," then program staff recommends that the name be the one used on a still birth certificate. It would be necessary to corroborate prior stillborn deaths through existing records. Please note the interesting facts regarding the registration of Texas fetal death certificates: * Fetal death registration begin in 1924 to the present If Sen. Zaffirini wants to accomodate this request, we think the safest course of action is to simply create within the legislation the right of a parent to request a stillborn certificate for a stillborn event prior to the effective date of the bill, but not impose any obligation on the State or anyone else to affirmatively publicize this option beyond putting the information on our website. This is, of course, assuming we can corroborate a prior stillborn death. |
| On the same day - I sent the following response to Larkin: |
| Overall, I believe their feedback is positive. I’m pleased
that the parents will be told of the availability of the certificate at
the time of the stillbirth (this is still something that I want
'written' into the legislation, though, it's too important to leave
out).
I fully understand their concerns with regards to ‘grandfathering’. I absolutely agree with the last paragraph where they state that the best course of action is to “simply create within the legislation the right of a parent to request a stillborn certificate for a stillborn event prior to the effective date of the bill, but not impose any obligation on the State or anyone else to affirmatively publicize this option beyond putting the information on our website.” By the way – do we have any idea what the DSHS will require from the parents to corroborate the stillbirth of their child in order to receive the ‘BIRTH CERTIFICATE FOR A BIRTH RESULTING IN STILLBIRTH’? All we have from the state is our son's Certificate of Fetal Death.. will that be enough? Okay... what's next? |
| On November 29, 2004 - I received by e-mail the first draft of the legislation for my personal review. It had not been made public - and it had not yet been filed. The text is transcribed below - but you can also access it by clicking HERE. (Microsoft Word may be required). |
|
AN ACT relating to the issuance of a birth certificate for a birth resulting in stillbirth on request of a parent. BE IT ENACTED BY THE LEGISLATURE OF THE STATE OF TEXAS: SECTION 1. Subchapter A, Chapter 192, Health and Safety Code, is amended by adding Section 192.0022 to read as follows: Sec. 192.0022. BIRTH CERTIFICATE FOR A BIRTH RESULTING IN
STILLBIRTH. SECTION 2. Not later than the 60th day following the effective
date of this Act, the bureau of vital statistics of the Department of
State Health Services shall prescribe the form and content of a birth
certificate for a birth resulting in stillbirth as required by Section
192.0022, Health and Safety Code, as added by this Act. |
| Later that evening - after having had some time to review - I sent my concerns to Larkin Tackett: |
| Thanks for allowing me the opportunity to look this over. The
language in this bill draft is a huge step in the right direction, but
I think something is missing. Unless parents know that the certificate
exists - they will not ask for it. Somewhere in the chain of events
that occurs when a parent's baby dies to stillbirth - the parent needs
to be told that this certificate has been made available for them.
Somehow we need to mandate that hospitals (and/or funeral directors)
educate their employees in order to ensure compliance with this new
law. In some states where the education hasn't been mandated, the
parents don't know that the state has made the certificate available to
them until they find the information on a website somewhere.
Changes: 1. Let’s strike the whole ‘on request of a parent’ thing. Lines 11 and 12 on Page 1 bug me. I would like it to be made MANDATORY that the parent be offered the opportunity to receive the Certificate of Birth Resulting in Stillbirth (BCBRS). The parent or parents should be offered the option to receive the BCBRS at the same time that the information for the Fetal Death Certificate is being gathered (presumably by the "person in charge of interment or in charge of removal of a body from a registration district for disposition" - because in the state of Texas, that's who is responsible for obtaining and filing a fetal death certificate). Wisconsin's legislation includes this: Arizona's legislation includes the sentence: It's all about the word 'shall' - and I think it makes a huge difference. 2. I would like the Certificate of Birth Resulting in Stillbirth to be "grand-fathered" and made available to all the parents of stillborn children whose birth/death occurred BEFORE this legislation becomes law. Wisconsin's legislation includes this: 3. With regards to lines 19 through 21 on Page 1 and lines 4 through 9 on Page 2, I know that there have been some issues in other states, most notably in South Carolina, where the form and content of the certificate was completely left to the discretion of the state (without input from parents, the true stakeholders) and in those cases, the parents were extremely disappointed when they received something that looked more akin to a fast-food receipt than a state-issued birth certificate. I'd like it very much if we could work together to provide parents what they would like. Please let me know if you have any questions regarding the changes I’m asking for. |
| On November 17, 2004 - I received official word that Senator Zaffirini had agreed to carry the bill. |
| Today is November 3, 2004. In the month of October,
we made some significant progress. I've been in contact with hundreds
of folks here in Texas - and I have asked them to tell their
legislators that they fully support the 'MISSing Angels' legislation
that Representative Burnam and Senator Zaffirini are considering.
By the way, if you live in Texas, and would like your legislators to know what's on your mind - regarding the MISSing Angels legislation or anything else - find out who represents you by clicking on the link below: Who Represents Me? -- Districts By Address Mr. Tackett and I have been in constant contact. I've also kept Mr. Colin Leyden (Representative Burnam's Legislative Aide) informed of the progress that is being made. Yesterday, on a conference call with representatives from Department of State Health Services, Mr. Tackett gave me the opportunity to speak on why I was proposing the legislation. I can't say that all of the DSHS participants in the conference call really understood what it was I was asking for. We are asking that Texas do something more - and that 'something more' is simply this: Under Texas Law, when a certificate of fetal death is required to be filed - and the child was stillborn - the parents will be offered the opportunity to receive (and subsequently pay for) a 'Certificate of Birth - Resulting in Stillbirth'. It really is that simple. I'm confident that we're making steps in the right direction. I'd like to say "THANKS!!" to everyone for hanging in there - and helping me to do this. I should have some more news to report in the days ahead. |
| On September 24, 2004, Mr. Tackett and I spoke on the phone. I was told that Senator Zaffairini was very interested in the legislation. Saturday evening, Carolyn and I spent a few hours putting together a packet of information for the Senator, and we'll be mailing it out to Austin on Monday morning, September the 27th. |
| On September 23, 2004, I received the following e-mail: |
| John & Carolyn,
My name is Larkin Tackett and I'm the Legislative Director for State Senator Judith Zaffirini. I've just recently joined Senator Zaffirini's staff and came across your work on the MISSing Angels bill. I would very much appreciate the opportunity to discuss this issue with you as we are currently compiling our legislative package for the 2005 Session. Please give me a call or email at your earliest convenience. Thanks, Larkin Tackett |
| Today is March 19, 2004.
It's been a long time since my last update - sorry about that. I've since met with the State Representative who represents the district I've worked in for the past 5 years. His name is Lon Burnam. His Legislative Director in Austin, Colin Leyden, recently wrote: "At this point it is on track to be part of our legislative package for the 79th session. All ideas for legislation will still be reviewed for final approval by our District 90 Legislative Committee." "The legislature does not convene until January of 2005. Our final decisions for our legislative package will not happen until probably towards the end of this summer into early fall. You have been an effective advocate for the legislation. At this point, I don't see any reason why it won't end up as part of our final package. However, I will certainly let you know ASAP if it did not - to allow you time to "shop" the bill elsewhere. Please keep me updated with any developments of similar bills across the nation." During our meeting, Representative Burnam seemed genuinely interested in introducing this legislation - and doing so in a manner that would make it clearly bipartisan. As his Legislative Director requested, I've been keeping them updated on Missing Angels legislation across the country. |
| Today is October 10, 2003.
I've received an e-mail from my Representative's office - and the news isn't good. The Representative's Chief of Staff wrote: The hope that Represenative Anna Mowery had been giving us - was crushed. So,... now I'm 'shopping' for a better, "kinder gentler" bill author - and I hope to know something soon. With Texas' continuing redistricting mess - and the next regular legislative session being so far away - I understand that this is going to be a slow, arduous process. Keep checking back. This is Texas.. you never know what might happen. |
| Today is October 2, 2003.
So much has happened with our personal lives - and - in so short a time. At the end of July (right around the time I last updated this site) Carolyn and I found out that we were pregnant. Cautiously optimistic, we began to prepare for the arrival of Bump's little brother or sister. On September 3rd, during a routine ultrasound examination, Carolyn and I learned that at just shy of 11 weeks gestational age, our baby's heart was no longer beating. Although it was actually too early in the pregnancy to determine gender, we'd always thought of this baby as a girl and we decided to name her Skye. We're doing better day by day. Slowly, we're learning to deal with this new kind of grief. The messages of sympathy and support that we have received have been awesome. It means so much to us that so many kind people have kept us - and our children - in their thoughts. From the bottom of our hearts - thank you all. |
| On September 9, 2003, the Governor issued yet another
proclamation.
Yep, Congressional Redistricting is back on the agenda again (among other important topics). I haven't been in contact with Representative Mowery's aides in quite awhile. With all this "redistricting stuff" going on, it just seems a little pointless. Once this third special session is over (and it looks like Representative Mowery might be spending some amount of time in her district office) then I will be in contact. |
| Here we go again... today is July 30, 2003.
On July 28, Texas Governor Rick Perry issued yet another proclamation calling for a second special session to consider congressional redistricting. The "very partisan environment" continues to unfold - and there is no end in sight. I am still in regular contact with Representative Mowery's aides in Austin and Fort Worth. They have assured me that I will have a chance to speak with the Representative at the earliest possible moment. I can only speculate that our meeting will take place sometime in later part of August. Silently, our son came into this world on August 1, 2002. For me, it's hard to believe that nearly one year has passed... we'll always remember and miss you, Bump. |
| Today is June 27th, 2003.
On June 21, Texas Governor Rick Perry issued a proclamation calling the legislators back to Austin (starting June 30th) for a special session to "consider legislation relating to congressional redistricting." I've since been in contact with Representative Mowery's office. Upon the completion of the special session (which has no set 'completion date') and prior to the Representative taking a leave of absence for a much-needed vacation, they have promised to set aside a block of time for us to visit her in the district office (in Fort Worth) and talk about a MISSing Angels Bill for Texas. I think we're on the right track. |
| On June 6, 2003, I e-mailed (in part) the following to Representative Mowery's aide: |
| Once upon a time, you wrote: "If for some reason we are not
able to get it passed this session, please contact us well before the
next session starts and we can begin to work on it before the session
starts."
I have a couple of questions. How soon can we begin working on this legislation, and, is Representative Mowery still interested in authoring and sponsoring it? Thanks and Best Regards, John Nevels, II |
| Long story short, Representative Mowery is expecting to be
called back to Austin for a special session.
I truly believe that her aide is NOT going to let her forget about the Texas MISSing Angels Bill. This is due, in part, to that fact that I'm not going to let her aide forget about the Texas MISSing Angels Bill! I'll keep you posted. |
| On June 2, 2003, the 78th Legislature 'Regular
Session' ended. Not at all surprising to those familiar with the very
partisan environment that unfolded during this session, the 'MISSing
Angels Bill' was not formally introduced.
Indeed, we 'came to the table' too late. Some may see this as a defeat, but this 'battle' has only just begun. With 'courageous patience', I assure you, this will be done. |
| On May 22nd through the 24th 2003, Carolyn and I
attended The M.I.S.S. Foundation's annual "Passages" conference for
2003. "Fulfilling",.. "thought-provoking",.. "healing",.. "refreshing".
These are the words that come instantly to our minds when thinking of
how much the conference meant to us. A special "THANK YOU!" goes out
from us to all those who sponsored, attended, and publicized this event.
Kara L.C. Jones (writer, poet, publisher and friend) posted her account of the event, "A Bereaved Parent in Context: "Rising from the Ashes..." on The M.I.S.S. Foundation's Seattle Chapter's website. |
| On May 1, 2003, through e-mail correspondence, I
learned from an aide in Representative Mowery's office that one of the
Senators had expressed an interest and had planned to offer this as an
amendment to one of the existing bills; however, when the bill came
out, it did not have the amendment on it."
Subsequently, when I asked the aide if I had any "real" chance this session, I was told: "As much as I'd like to say yes, there is not much of a chance this session. We got started too late and they are debating budget, ethics, etc. which is of primary interest to all of them now and they don't seem to be making much headway. I wish I could be more positive." |
| On April 21, 2003, I wrote a brief letter to each of
the above asking for their support. The text of the letter follows: |
| Senator/Representative ________________,
My name is John Nevels, II - I am the father of Bump Nevels, my only child, who was stillborn on August 1, 2002. Recently, Representative Anna Mowery contacted your office with regards to adding a “Missing Angels” amendment to Senate/House Bill __________. This amendment would allow for the issuance of a “Certificate of Birth Resulting in Stillbirth”. Please give the “Missing Angels” amendment proposal a close look – and then, please help to give our mothers in the State of Texas the recognition that they deserve. Respectfully, John Nevels, II |
| On April 9, 2003, Representative Mowery wrote me the following response: |
|
Dear Mr. Nevels: Thank you for your fax with bill numbers of possible germane legislation now pending. This was of tremendous help. I have sent a copy of your original letter to each of the bill authors with a suggestion they offer an amendment to the bill which they have authored in the respective Houses. I will let you hear from me as soon as I receive a reply from them. Sincerely, |
| For the record: House Bill No. 1353 was authored by State Representative Carlos Uresti, House Bill No. 2990 was authored by State Representative Jaime Capelo, Senate Bill No. 1553 was authored by Senator Kyle Janek, and, Senate Bill No. 1744 was authored by Senator Judith Zaffirini. |
| On March 31, 2003, I received a phone call from
Representative Mowery during which she informed me that in Texas, we
were more than halfway through our current legislative session (which
only meets once every two years). We 'came to the table' too late to
author and submit a "MISSing Angels Bill" all by itself. Representative
Mowery assured me that she would look for existing legislation that
might be germane (related to) the "MISSing Angels Bill". The idea is
that the language contained in Arizona's "MISSing Angels Bill" could be
written as an amendment and attached to the pre-existing and somewhat
relative legislation.
After consulting with some well-respected colleagues, I did a little research on pending legislation and faxed Representative Mowery the following: |
| April 4, 2003
State Representative Anna Mowery Representative Mowery, Once again, thank you for your phone call last Monday afternoon. I hope I’m not being too forward, but after doing some research, I believe that I may have found some bills that are germane to the “Missing Angels” legislation that I am requesting. The bills that I’ve found are: House Bill No. 1353 Please let me know what your thoughts are to amending one of these bills to include the “Missing Angels” language. Respectfully, John Nevels, II |
| On March 24, 2003, I sent a written letter to Texas
State Representative Anna Mowery. The following is the text of that letter: |
| The Honorable Representative Anna Mowery Texas House of Representatives 6421 Camp Bowie Blvd. #310 Fort Worth, Texas 76116 Dear Representative Mowery, Texas’ mothers, parents and families are in need of your help. As a registered voter and a constituent in your district, I ask that you please take a little time and consider what I am about to share with you. Let me start by telling you about my wife Carolyn, and the birth of our son, Bump Nevels. In mid-January 2002, Carolyn and I were overjoyed to learn that we were pregnant with our first child. Although having a child is meant to be one of the happiest things that can happen in one’s life, our pregnancy ended abruptly in complete devastation. On July 30th, during a routine prenatal non-stress test, we discovered that our son’s heart was no longer beating. He was no longer alive. It’s important for me to convey to you that during our pregnancy Carolyn never drank alcohol, she didn’t smoke, and she didn’t endanger our son in any ‘way, shape or form’. We followed our doctor’s advice at every turn and regardless of our doing the ‘right things’, our son was dead. Our doctor prescribed medication that would induce labor on the 31st of July and after Carolyn endured natural childbirth for 18 long hours - she delivered our son on August 1, 2002. ‘Stillbirth protocols’ at hospitals, or the lack of them, dictate if the parents will be given mementos such as the ‘crib-card’ or the wrist and ankle bands associated with the birth of their baby. Parents of stillborn babies go home with empty arms and broken hearts. It’s easy to understand how any ‘tangible item’ from these tragic events can be considered important in the bereavement process. In those mind-numbing and surreal hours in the labor and delivery room after our son was born, we were asked what official name we’d like to give our son. We were then told that we would have to make a decision - our son would have to be buried or cremated. Within a few days of his delivery, we received an official ‘Certificate of Fetal Death’ along with our son’s cremains (ashes) from the funeral home. The most perfect and natural case of ‘adding insult to injury’ has to be this: Carolyn’s body was still producing milk for our son nearly a full month after we had him cremated. The second most perfect case of ‘adding insult to injury’ has to be this: Shortly after picking up Bump’s ashes from the funeral home, we were shocked to learn that there would be no ‘Birth Certificate’ from the State of Texas – since there are no provisions for them ‘by law’, it’s simply ‘not done’. Carolyn endured the physical pain of natural childbirth alone - as all mothers must do. I would have suffered that pain for her if it were scientifically possible - but it’s not. Together, my wife and I have learned to live with the emotional trauma of our son’s death. I think we’ve come a long way, but we still don’t understand why the State of Texas, by omission, refuses to officially acknowledge the birth of our son. I am asking you to support a ‘Missing Angels Bill’ for the State of Texas. Under this bill, parents who lose a child after 20 weeks of gestation would be given the option to receive a "Certificate of Birth Resulting in Stillbirth". As of this letter, Texas would be the 6th state to adopt such meaningful legislation as Arizona, Utah, Indiana, Massachusetts, and Michigan have already enacted ‘Missing Angels Bills’ into law. According to The Texas Department of Health, Bureau of Vital Statistics 2001 Annual Report Summary, the number of fetal deaths (stillbirths) increased from 2,150 in 2000 to 2,315 in 2001. It is my hope that Texas will quickly rise to the occasion, follow Arizona’s lead, and meet the expectations of bereaved parents who suffer such devastating losses. Perhaps one day the state will deem it appropriate to acknowledge my son Bump, and all of Texas’ stillborn children. The fact is: they lived, they died, and that - even in death, all of these children very much matter. I have enclosed four pages of information regarding Arizona’s “Missing Angels Bill” for your review. I will 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 either of the above phone numbers. Thanks for all that you do to help Texas families and we appreciate your attention to this important issue. Respectfully, John Nevels, II P.S. A great number of people, at home and abroad, have shown
their support in getting a Missing Angels Bill passed in Texas (and
beyond). I encourage you to view two online petitions that I’ve
created. They are located at: |
