The committee vote on Noah’s Law was scheduled to take place on Friday afternoon, so Kathy (the lactation consultant who got this bill rolling), Rebecca (our childbirth educator who has also been involved in the bill) and I made the trip to Augusta once more so we could be present to answer any questions that might arise. The work session for our bill was scheduled for 1 p.m., and around noon Kathy got a message on her phone saying the bill had passed by unanimous vote. Unfortunately, the message didn’t tell us what the language of the final bill had been like – for all we knew, they had passed a version that simply allowed for a meaningless slip of paper be given to grieving parents. After a brief debate, we decided to finish the journey to Augusta in hopes of tracking down more information.
We wandered around the state building for a few minutes and were wondering what to do next when our senator who is sponsoring the bill happened to walk out of a doorway near where we were standing. We flagged her down and asked her to explain the committee’s decision in more detail. As it turns out, they had decided to address it early because they were all in agreement about passing the version we had submitted on Thursday evening. After the hearing on Wednesday, Kathy spoke with a person who has been involved in helping most other states create Certificates of Birth Resulting in Stillbirth, and he said the vital statistic issue wasn’t crucial as long as the certificates we receive are official state documents. Apparently, most other states use the fetal death certificate as the primary vital record and the official certificate of birth emanates from that. Given that information, we decided we could settle for the same in the state of Maine. According to the language of our amendment, the parents of stillborn babies will now receive an official Certificate of Birth Resulting in Stillbirth, and it will have the state seal on it. Also, the bill will be retroactive, so parents who have had stillborn babies in the state of Maine in the past can also obtain their certificates of birth.
Because the committee vote was unanimous, the bill is almost guaranteed to get through the house and the senate without trouble. Based on the current timeline, it could be signed into law within the next two to three weeks. After the senator had explained the situation to us, she decided to ask the committee if they would be willing to put an emergency preamble on the bill, which would mean the law would go into effect immediately after signing, instead of having to go through the typical 90 day waiting period. The committee agreed without hesitation, and then one of the legislative clerks offered to set up a ceremonial signing with the governor, which will happen toward the middle of June. Noah’s certificate of birth will be the first to be printed, and Mark and I will receive it during the ceremony.
Overall, we have accomplished the two primary goals of this bill: the parents of stillborn babies will now receive certificates of birth in addition to certificates of death, and the state of Maine is recognizing the lives that have been lost. Already, this has been a comfort to us and other families who have become involved in this legislation, and I pray it will bring peace to the people who experience this unique kind of tragedy in the future. We appreciate everyone who has supported us through this process through prayers, e-mails, phone calls and other forms of communication.
Because this bill will be known as Noah’s Law, it will become a lasting legacy for our son and we feel indescribably blessed and humbled by that fact. We are no different from any other parents who have lost much-wanted babies to stillbirth in the state of Maine, yet God connected us with the right people at the right time in the right circumstances and then gave us the strength to share our story. If Kathy hadn’t been at the hospital on the day Noah was born, if she hadn’t known how to start a bill with the local senator, if I hadn’t decided to donate my breast milk and stay in touch with Kathy – I could list a dozen other ifs that would have changed this situation such that Noah’s name would not be on the bill, but eventually I would get around to “if Noah’s umbilical cord had stayed where it was supposed to stay”…and I just can’t go there. The circumstances are what they are, and we have been blessed in a unique way.
This past week has been an emotional one, to say the least. And, well, today is Mother’s Day, but my thoughts and emotions on that front are another story for another time. We continue this journey we didn’t expect and wouldn’t have chosen, trusting in the belief that all things will ultimately work together for good.
P.S. We found out a day or two after the hearing that it had been covered by the local news. If you want to see a brief clip of Mark’s testimony, here’s the link: http://www.wmtw.com/video/19390255. The story starts at minute 1:54 and is about a minute long. The newscaster uses the information from the original bill, not the one with the amendments we negotiated.
Sunday, May 10, 2009
Thursday, May 7, 2009
The Hearing
The hearing for Noah’s Law was held yesterday, and overall, things went fairly well. The worst part was the wait – our bill was scheduled to go before the committee at 3 p.m., and they didn’t call us until almost 7 p.m. Since we had arrived in the state building early to ensure we had everything set, we had more than five hours of downtime before the most emotional public speaking moment of our lives. Fortunately, we had a little group of supporters and were able to keep each other fairly well distracted, at least from thinking about how nervous we were. Mark even got to play with transformers for a while, thanks to a new friend who is always prepared for moments of boredom (though I think she had her four-year-old son in mind when she put the toys in her purse).
I could ramble on describing the day, but I’ll spare you the nitty-gritty details and just say that our turn did come eventually, though not before the committee was tired and perhaps just a little cranky. Mark and I were the first to testify, and we made it through, though both of us struggled to maintain composure and neither of us was able to avoid being teary. When we were finished, four other people testified, including people from our support group and one woman who saw our story on the news.
No one stood up to oppose the bill, but the director of the Maine Center for Disease Control did stand up as “neither for nor against” because she wanted to voice concerns over the current language of the bill. She had several points, but the one that potentially going to cause us the most trouble is related to making the certificate of birth resulting in stillbirth a vital record – apparently the CDC director is worried doing so could open the door for increased identity theft. She suggested instituting a “commemorative” birth certificate, but our goal in trying to pass this legislation is to make sure our babies are recognized by the state, not just to get pieces of paper with their names on them. After the hearing, the CDC director came out in the hall to discuss the situation with us and was very sympathetic to our cause, but was adamant about the vital statistic piece. We agreed to do more research and to send her amendment language that might satisfy both parties.
Today, we have been working on finding out how the other 26 states that have passed similar legislation are handling this issue. Our deadline is tight, since the work session in which the committee will vote is scheduled for tomorrow afternoon. I’m hoping we can get to a place where everyone is happy, so we can move this bill on to the next stage. Based on the communications we've had today, things are looking promising. I'll keep you posted.
Below, I will paste the text from the testimonies Mark and I gave. I’m also going to insert a picture of the poster Kathy made for us to set up in front of the podium as we testified.
Mark and Lindsay Schuenke Testimony
Lindsay
Senator Brannigan, Representative Perry and members of the committee, we are Mark and Lindsay Schuenke from Biddeford and we are here to support LD 361. In the interest of this bill, we would like to tell you the story of our son, Noah James Schuenke.
I found out I was pregnant with our first child on January 18, 2008. We were thrilled – Mark had a good job, I had started working part-time from home, we had purchased a house – it felt like the right time to add a baby to our family. During the eight months that followed, I progressed through a normal pregnancy, never giving the doctors any reason for concern. We found out we were having a boy, and we both enjoyed getting to know our son as he moved around in my belly.
By the time I went into labor nine days before my due date, we were ready: the nursery was decorated, the diapers were stacked, the car seat was installed, the little clothes were washed and organized. We had also taken a birthing class and written a birth plan in an attempt to get a handle on the process of childbirth, which was as yet unknown to us. So, when we headed for the hospital, we were a little anxious about delivery and I was in quite a bit of pain, but above all we were excited at the prospect of meeting our son and holding him in our arms for the first time.
Of course, this story doesn’t have a happy ending, or else we wouldn’t be sitting here today. When we arrived at the hospital, the nurse started hooking me up to the fetal monitor, but couldn’t find a heartbeat. In that moment, I knew something was wrong, but I was in denial while the nurse brought in the ultrasound machine, and eventually called in the doctor with an internal heart monitor. The doctor was the one who finally delivered the news – our son no longer had a heartbeat. As soon as our baby crowned, the doctor could see the reason for the tragedy – his umbilical cord had gone into the birth canal before his head and become crushed as he descended. Our baby boy came into this world silently, when just hours earlier he had been kicking his little legs as I breathed through the early contractions. I have no words to describe our emotions in the minutes and hours that followed. We had arrived at the hospital anticipating the happiest moment of our lives, and instead we were faced with the most devastating.
Although Noah is almost always on my mind, there are times when this whole experience is surreal. I carried my son for nine months, feeling his every movement, getting to know his personality and imagining the future we would have as a family. I went through the pain of childbirth to deliver him, yet to the outside world, there is no evidence that I am a mother. I’m not pushing a stroller through the neighborhood, or carrying my infant into the grocery store, or chatting with other mothers about sleep deprivation and baby food. Sometimes, I start to wonder if I’m truly a mother at all.
The name Noah means peace and comfort. When we put that name at the top of our list months before Noah was born, we had no idea how fitting it would be. We hope and pray that the passage of this bill will bring some measure of peace and comfort to the parents of stillborn babies by recognizing the children they loved and nurtured, but to whom they had to say goodbye far too early.
Mark
Three of those four pictures (indicating poster) are of our Noah. To the uninformed onlooker, that’s just a sweet, little sleeping child. There’s no pain or awkwardness when those uninformed people look at the pictures. But to me, I feel love, and pride, and confusion, and devastating sorrow.
So what’s the difference between how I view those pictures and how the uninformed view them? A blissful ignorance is one difference, but to look at it from another angle, the difference is minutes. Maybe 5 minutes, maybe 30 – we don’t know exactly how much time had passed between when Noah left us, and when we arrived at the hospital. But we were close. We were just moments from being joyful parents – just moments from being ignorant to the fact that the parents of stillborn children are left with nothing, but a death certificate. We were so close, but that wasn’t God’s plan for us…
As Lindsay has already told you, we arrived expecting to deliver a healthy baby, and within minutes, we were told there was no heartbeat. Less than an hour later, Lindsay delivered our baby. Then, we were ushered off of the maternity ward to a recovery room. The two of us squeezed into one hospital bed, and there we began life as the parents of a stillborn child.
The staff at Southern Maine Medical Center was very good. They were gracious and giving. We were fortunate to be able to hold our son three times that day, including the opportunity to have these professional pictures taken. We were able to take in our son’s perfection - his ten fingers and ten toes, the gorgeous strawberry blonde hair of his grandfather, his mother’s cheeks, his father’s chin. Everything was perfect, except the silence of his heart.
Between the times with our son, there is very little time to grieve on that first day. Instead, we were forced into action – painful phone calls, funeral arrangements, whether to donate breast milk, and of course, a name for our baby. Throughout the pregnancy, we struggled to find the right name for our child. We had even joked that once we arrived at the hospital, we’d be forced to settle on a name or else they wouldn’t let us take our baby home. As it turned out, we were forced to settle on a name, and as it turned out we realized how much we had loved the name Noah James all along. So much so, that we had a moment of deliberation as to whether we should give this name to our stillborn child or whether we should save it for a future, living son. Those thoughts were fleeting, as we quickly realized that this is our son who we love, and he is Noah. That realization was uplifting, but I was quickly snapped backed to our sorrowful reality when I realized the first place I would have to write that name – on Noah’s death certificate.
Down the hall, in the maternity ward, all of those parents were writing names on birth certificates, but we were writing on a death certificate. State law required Noah’s death to be part of the vital record, because as dictated by the uniform determination of death act, adopted by the United States in 1981, anyone with irreversible cessation of all functions of the entire brain is dead. I have no problems with that definition of death. My issue is that the term cessation implies that the function had taken place. Noah had brain function. Noah was alive. We’re simply asking that if his death be a vital record, that his life also be vital record.
Mothers’ Day is in 4 days. Lindsay is a mother. On a human level, everyone can see that, but on the state level there is no recognition for that beautiful boy that Lindsay nurtured for 9 months. So, what do I get the mother of a stillborn child for Mothers day? I’d like to get her a nice frame for the birth certificate that you all can make happen for us. To paraphrase the poster – Noah and so many others were stillborn, but they were STILL BORN. Please pass this bill. Thank you for your time.
I could ramble on describing the day, but I’ll spare you the nitty-gritty details and just say that our turn did come eventually, though not before the committee was tired and perhaps just a little cranky. Mark and I were the first to testify, and we made it through, though both of us struggled to maintain composure and neither of us was able to avoid being teary. When we were finished, four other people testified, including people from our support group and one woman who saw our story on the news.
No one stood up to oppose the bill, but the director of the Maine Center for Disease Control did stand up as “neither for nor against” because she wanted to voice concerns over the current language of the bill. She had several points, but the one that potentially going to cause us the most trouble is related to making the certificate of birth resulting in stillbirth a vital record – apparently the CDC director is worried doing so could open the door for increased identity theft. She suggested instituting a “commemorative” birth certificate, but our goal in trying to pass this legislation is to make sure our babies are recognized by the state, not just to get pieces of paper with their names on them. After the hearing, the CDC director came out in the hall to discuss the situation with us and was very sympathetic to our cause, but was adamant about the vital statistic piece. We agreed to do more research and to send her amendment language that might satisfy both parties.
Today, we have been working on finding out how the other 26 states that have passed similar legislation are handling this issue. Our deadline is tight, since the work session in which the committee will vote is scheduled for tomorrow afternoon. I’m hoping we can get to a place where everyone is happy, so we can move this bill on to the next stage. Based on the communications we've had today, things are looking promising. I'll keep you posted.
Below, I will paste the text from the testimonies Mark and I gave. I’m also going to insert a picture of the poster Kathy made for us to set up in front of the podium as we testified.
Mark and Lindsay Schuenke TestimonyLindsay
Senator Brannigan, Representative Perry and members of the committee, we are Mark and Lindsay Schuenke from Biddeford and we are here to support LD 361. In the interest of this bill, we would like to tell you the story of our son, Noah James Schuenke.
I found out I was pregnant with our first child on January 18, 2008. We were thrilled – Mark had a good job, I had started working part-time from home, we had purchased a house – it felt like the right time to add a baby to our family. During the eight months that followed, I progressed through a normal pregnancy, never giving the doctors any reason for concern. We found out we were having a boy, and we both enjoyed getting to know our son as he moved around in my belly.
By the time I went into labor nine days before my due date, we were ready: the nursery was decorated, the diapers were stacked, the car seat was installed, the little clothes were washed and organized. We had also taken a birthing class and written a birth plan in an attempt to get a handle on the process of childbirth, which was as yet unknown to us. So, when we headed for the hospital, we were a little anxious about delivery and I was in quite a bit of pain, but above all we were excited at the prospect of meeting our son and holding him in our arms for the first time.
Of course, this story doesn’t have a happy ending, or else we wouldn’t be sitting here today. When we arrived at the hospital, the nurse started hooking me up to the fetal monitor, but couldn’t find a heartbeat. In that moment, I knew something was wrong, but I was in denial while the nurse brought in the ultrasound machine, and eventually called in the doctor with an internal heart monitor. The doctor was the one who finally delivered the news – our son no longer had a heartbeat. As soon as our baby crowned, the doctor could see the reason for the tragedy – his umbilical cord had gone into the birth canal before his head and become crushed as he descended. Our baby boy came into this world silently, when just hours earlier he had been kicking his little legs as I breathed through the early contractions. I have no words to describe our emotions in the minutes and hours that followed. We had arrived at the hospital anticipating the happiest moment of our lives, and instead we were faced with the most devastating.
Although Noah is almost always on my mind, there are times when this whole experience is surreal. I carried my son for nine months, feeling his every movement, getting to know his personality and imagining the future we would have as a family. I went through the pain of childbirth to deliver him, yet to the outside world, there is no evidence that I am a mother. I’m not pushing a stroller through the neighborhood, or carrying my infant into the grocery store, or chatting with other mothers about sleep deprivation and baby food. Sometimes, I start to wonder if I’m truly a mother at all.
The name Noah means peace and comfort. When we put that name at the top of our list months before Noah was born, we had no idea how fitting it would be. We hope and pray that the passage of this bill will bring some measure of peace and comfort to the parents of stillborn babies by recognizing the children they loved and nurtured, but to whom they had to say goodbye far too early.
Mark
Three of those four pictures (indicating poster) are of our Noah. To the uninformed onlooker, that’s just a sweet, little sleeping child. There’s no pain or awkwardness when those uninformed people look at the pictures. But to me, I feel love, and pride, and confusion, and devastating sorrow.
So what’s the difference between how I view those pictures and how the uninformed view them? A blissful ignorance is one difference, but to look at it from another angle, the difference is minutes. Maybe 5 minutes, maybe 30 – we don’t know exactly how much time had passed between when Noah left us, and when we arrived at the hospital. But we were close. We were just moments from being joyful parents – just moments from being ignorant to the fact that the parents of stillborn children are left with nothing, but a death certificate. We were so close, but that wasn’t God’s plan for us…
As Lindsay has already told you, we arrived expecting to deliver a healthy baby, and within minutes, we were told there was no heartbeat. Less than an hour later, Lindsay delivered our baby. Then, we were ushered off of the maternity ward to a recovery room. The two of us squeezed into one hospital bed, and there we began life as the parents of a stillborn child.
The staff at Southern Maine Medical Center was very good. They were gracious and giving. We were fortunate to be able to hold our son three times that day, including the opportunity to have these professional pictures taken. We were able to take in our son’s perfection - his ten fingers and ten toes, the gorgeous strawberry blonde hair of his grandfather, his mother’s cheeks, his father’s chin. Everything was perfect, except the silence of his heart.
Between the times with our son, there is very little time to grieve on that first day. Instead, we were forced into action – painful phone calls, funeral arrangements, whether to donate breast milk, and of course, a name for our baby. Throughout the pregnancy, we struggled to find the right name for our child. We had even joked that once we arrived at the hospital, we’d be forced to settle on a name or else they wouldn’t let us take our baby home. As it turned out, we were forced to settle on a name, and as it turned out we realized how much we had loved the name Noah James all along. So much so, that we had a moment of deliberation as to whether we should give this name to our stillborn child or whether we should save it for a future, living son. Those thoughts were fleeting, as we quickly realized that this is our son who we love, and he is Noah. That realization was uplifting, but I was quickly snapped backed to our sorrowful reality when I realized the first place I would have to write that name – on Noah’s death certificate.
Down the hall, in the maternity ward, all of those parents were writing names on birth certificates, but we were writing on a death certificate. State law required Noah’s death to be part of the vital record, because as dictated by the uniform determination of death act, adopted by the United States in 1981, anyone with irreversible cessation of all functions of the entire brain is dead. I have no problems with that definition of death. My issue is that the term cessation implies that the function had taken place. Noah had brain function. Noah was alive. We’re simply asking that if his death be a vital record, that his life also be vital record.
Mothers’ Day is in 4 days. Lindsay is a mother. On a human level, everyone can see that, but on the state level there is no recognition for that beautiful boy that Lindsay nurtured for 9 months. So, what do I get the mother of a stillborn child for Mothers day? I’d like to get her a nice frame for the birth certificate that you all can make happen for us. To paraphrase the poster – Noah and so many others were stillborn, but they were STILL BORN. Please pass this bill. Thank you for your time.
Monday, May 4, 2009
Noah’s Law
A few months after we lost Noah, we became involved with a piece of legislation to allow the parents of stillborn children to receive a certificate of birth resulting in stillbirth. As the Maine law currently stands, a child who is stillborn (definition: born after 20 weeks gestation and never takes a breath) is required to have a death certificate, but is not eligible to receive a birth certificate. This situation seems to defy logic: how can there be a death if there was never a life?
Kathy, the lactation consultant at the hospital where I delivered Noah, has actually been the driving force behind this bill. She was at the hospital the day we were there, and was helping fill out our paperwork when she noticed the conspicuous absence of a birth certificate. After some research online, she discovered that 25 states in the U.S. have enacted legislation to allow birth certificates for stillborn babies, but Maine was not yet one of them. Kathy decided to take action by contacting our local state senator and asking her to initiate a new law.
I started developing a relationship with Kathy when I decided to donate my breast milk. She was incredibly supportive of the process, bringing me a pump and answering all the questions I had about lactation. I talked with her about how donating breast milk was one tangible way I could bring good from the tragedy we had experienced, and she tentatively brought up the idea of working on the bill as something else we could do to help Noah’s short existence have a positive impact on the world.
Up until that point, Mark and I had simply accepted the fact that we weren’t going to get a birth certificate. We were still in the early stages of grief, and hadn’t thought to explore the legalities of the situation. However, we were certainly aware of not getting a birth certificate, particularly on the day we spent in the hospital. Before Noah was born, we had been waffling between a few different names, and joked that we were going to be forced to choose one when filling out the birth certificate. Instead, we found ourselves faced with the task of choosing a name for our son’s death certificate. Filling out those forms felt like adding insult to injury, but we had no choice.
When Kathy asked if we would become the face of this bill by putting our son’s name on it and sharing our story, we didn’t hesitate before saying yes. If this bill passes, the parents who go through this in the future will be spared the sadness of seeing their babies’ names on a death certificate but never having official recognition of the birth. We know this recognition will just be a small consolation in the vast sea of grief parents have to navigate when they experience stillbirth, but it’s something.
On Wednesday, there will be a hearing before the committee that is considering this bill. We’ve been gathering support from various forms, from petition signatures to e-mails to state representatives. We’re also hoping a fairly good crowd will turn out at the hearing itself, though it’s going to happen in Augusta, which is a bit of a drive for everyone in our network of friends. Mark and I are going to get on the stand to share our story, so we are praying for strength and peace as we try to find the right words.
I will post an update after the hearing on Wednesday, including the written text of our testimony. In the meantime, please be praying for us and the passage of this bill.
Kathy, the lactation consultant at the hospital where I delivered Noah, has actually been the driving force behind this bill. She was at the hospital the day we were there, and was helping fill out our paperwork when she noticed the conspicuous absence of a birth certificate. After some research online, she discovered that 25 states in the U.S. have enacted legislation to allow birth certificates for stillborn babies, but Maine was not yet one of them. Kathy decided to take action by contacting our local state senator and asking her to initiate a new law.
I started developing a relationship with Kathy when I decided to donate my breast milk. She was incredibly supportive of the process, bringing me a pump and answering all the questions I had about lactation. I talked with her about how donating breast milk was one tangible way I could bring good from the tragedy we had experienced, and she tentatively brought up the idea of working on the bill as something else we could do to help Noah’s short existence have a positive impact on the world.
Up until that point, Mark and I had simply accepted the fact that we weren’t going to get a birth certificate. We were still in the early stages of grief, and hadn’t thought to explore the legalities of the situation. However, we were certainly aware of not getting a birth certificate, particularly on the day we spent in the hospital. Before Noah was born, we had been waffling between a few different names, and joked that we were going to be forced to choose one when filling out the birth certificate. Instead, we found ourselves faced with the task of choosing a name for our son’s death certificate. Filling out those forms felt like adding insult to injury, but we had no choice.
When Kathy asked if we would become the face of this bill by putting our son’s name on it and sharing our story, we didn’t hesitate before saying yes. If this bill passes, the parents who go through this in the future will be spared the sadness of seeing their babies’ names on a death certificate but never having official recognition of the birth. We know this recognition will just be a small consolation in the vast sea of grief parents have to navigate when they experience stillbirth, but it’s something.
On Wednesday, there will be a hearing before the committee that is considering this bill. We’ve been gathering support from various forms, from petition signatures to e-mails to state representatives. We’re also hoping a fairly good crowd will turn out at the hearing itself, though it’s going to happen in Augusta, which is a bit of a drive for everyone in our network of friends. Mark and I are going to get on the stand to share our story, so we are praying for strength and peace as we try to find the right words.
I will post an update after the hearing on Wednesday, including the written text of our testimony. In the meantime, please be praying for us and the passage of this bill.
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