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.