At 3:30 a.m. on the morning of April 14th, I delevered the following testimony in front of the Texas State Legislature.
I was a veritable rock star. And it felt damn good.
My name is Julia _______. I am here today to tell you my story, and the story of my son, Thomas. I hope and pray that you will choose to open your ears and truly listen.
I was born and raised here in _______. I was raised in the church and I was raised a Republican because my family believed in small government, that had no place in our private lives. I was raised to be pro-choice for the same reason. I was a straight-A student and athlete throughout school, and I graduated from _________ University. I have a gold medal from the State Track Championships and I even attended Girl’s State. In short, I am the girl next door. I am your daughter, or your granddaughter. I am as all-American as apple pie. And I am the face of late-term abortion.
In June of 2002, on the first anniversary of our marriage, my husband and I conceived our first child. We spent the next five months attending uneventful doctor’s appointments, debating names, and decorating the nursery as we watched my belly grow.
In November, when I was 22 weeks pregnant, we received news that would forever change our lives. A sonogram at the perinatologist’s office revealed that our son, Thomas, had a condition known as arthrogryposis. The doctor’s face spoke volumes when he returned from fetching a medical book to confirm the rare diagnosis. He explained that arthrogryposis was a condition that causes permanent flexation of the muscle tissue. The condition could be caused by over 200 different diseases and syndromes, with a wide array of severity.
He asked for permission to do an immediate amniocentesis, and for the first time he used the word “termination. It was then that I first realized the gravity of our situation.
My husband and I were shocked and struggled to comprehend what we were being told.. It would take two weeks to receive the results of the amniocentesis, which might reveal the cause of the arthrogryposis, but we already knew that the prognosis was not good.
The ultrasound showed that Thomas had clubbed hands and feet. His legs were fixed in a bent position and his arms were permanently flexed straight. He had a cleft palate and swelling on his skull - a condition that would likely kill him in and of itself. Due to his inability to move, Thomas’s muscles had deteriorated to 25% or their usual size, and his bones to 25% of their usual density. (here is more specific information on Thomas's rare, fatal form of arthrogryposis.)
My husband and I were sent home to grapple with the news and face an unwelcome decision: whether or not to continue with the pregnancy.
We talked a lot. We met with a genetic counselor, we met with our pastor, we called our parents, and we read the stories of other couples who’d faced this decision in a book called Precious Lives Painful Choices, A Prenatal Decision-Making Guide.
By the time the amnio results came back, we had two days left to make a decision before hitting the 24 week mark – after which, no doctor in Texas would terminate a pregnancy. The results were devastating. Our son had no chromosomal disorder. There was no explanation at all for his condition, and as such, no way to predict the scope of his suffering. We would have to make our decision based strictly on what the ultrasound had revealed.
My husband and I decided that we would have to use the golden rule. We would do for Thomas what we would want done for us in the same situation.
We tried to look at the evidence as honestly as we could. Even the best case scenario was abominable.. Thomas would lead a very short life of only a few years at the very most. During those years he would be in constant pain from the ceaseless, charley-horse-type cramps that would rack his body. He would undergo numerous, largely ineffective surgeries, just to stay alive. He would never be able to walk or stand; never grasp anything, never be able to hold himself upright. He wouldn’t even be able to suck his own thumb for comfort. And this was only if we were lucky. The more likely scenarios tended toward fetal death and serious health complications for me.
We made our decision with one day to go and left for Houston where we would end Thomas’s suffering in one quick and painless moment. Though we wanted to stay at home, _______ was no longer an option, as all of the hospitals were religiously-backed and there was no time to convene an ethics committee hearing.
In Houston, God graced us with some of the most compassionate people we’d ever met. The first was our maternal-fetal medicine specialist, who confirmed that the prognosis was even direr than originally thought. In a procedure very similar to an amniocentesis, Thomas’s heart was stopped with a simple injection. In that moment, as I held my husband’s hand, I met God and handed him my precious boy to care for, for all eternity.
Over the next 17 hours I labored to deliver Thomas’s body. It was a painful experience, but the only option given to a woman at 24 weeks gestation. Thomas Stephen _______ was born into this world just after 6:00 a.m. on November 27, 2002 – the day before Thanksgiving.
The loving nurse who’d helped us through labor cleaned his fragile body and brought him to us. We held our boy for the next hour as we said goodbye. Our own eyes confirmed what our hearts had already come to know: that Thomas was not meant for this world. The hospital’s pastor joined us and we christened Thomas in the baptism bonnet I’d worn as an infant.
Thomas’s life and death have changed our lives in ways we will never fully comprehend I know he made me a better mother, a better friend, and a less judgmental, more compassionate human being. I know he is the reason I have the courage to stand in front of you today.
Through him, I’ve grown closer to God, who understands what it is to sacrifice your only begotten son in the name of mercy.
During the summer and fall that followed Thomas’s death, my husband and I lost two more children during first trimester miscarriages. We lost three children within the space of one year. On January 17th of this year, our prayers were finally answered with the birth of our daughter, Hannah. If anyone knows about the value and sanctity of life, I assure you, it is us.
I am here today in my son’s honor to tell you that life doesn’t always follow an easy path. And that life is almost never a black and white issue to be governed by others. I am here to put a face on the issue of abortion for all the families that cannot be here today. And I am here to beg you to remember me and Thomas each and every time you contemplate legislation that would deteriorate our God-given parental rights to do what is moral and just for our children.
Thank you.
(Here I included the picture of Todd and me in the hospital holding Thomas, and Thomas's ultrasound.)
Additional Information:
Since we lost Thomas, I have been blessed with the opportunity to meet many other parents like us through various support groups, internet message boards, and a blog (Web log, or online diary) that I write about our difficulties growing a family. I received the following, unsolicited letter from someone who had read about Thomas online:
“Please believe me that I do not usually write to total strangers but I felt compelled to tell you that your blog has changed me in a profound way.
I have been ardently pro choice for most of my life and fervently pro life for the last 4 of those years. The big reason for the switch? I terminated my first pregnancy 4 years ago, at 11 weeks. And lived to regret it with a force I could never have imagined. I have since aquired a psychiatrist, a therapist, a truckload of anti anxiety and anti depressant medication and ugly red scars on my wrists and ankles that are impossible to hide. I have been hospitalized many times on the wards where you aren't allowed to keep your shoelaces. I have never forgiven myself for signing papers requesting that my first baby be scraped away from me like so much plaque off a tooth.
And I decided that we do our sisters a great injustice, offering termination as a choice, when it causes so much pain. The hardest choice so often masquerading as the easy one. Termination, I screamed, should not be presented as a choice. It isn't fair to anyone.
Reading your blog, I realized that the right to terminate should never be taken away. As much as I have suffered greatly because I was given the choice to end my baby's life, your son would have suffered greatly if you had not been afforded that same right. Everything I believed in changed dramatically 4 years ago. It changed again today reading your blog. My staunchly pro life stance has been blind and ignorant.
I apologize to you for every time I spoke against the right to abort. I am truly sorry for every pro life candidate I ever voted for. I am, above all, so very very sorry for your loss.
Every February 8th I sit and cry for the little life that ended so fast, so wrongly. No one ever knew of him but me and so his name goes unspoken, his life goes unnoticed by the world. I often wish someone other than me knew of him, would love him and would miss him. Would think of him. I know how powerful that wish can be, that wish that your unborn baby not be forgotten or overlooked.
Your unborn baby has changed everything for me. Thomas Stephan was never born. But he made a difference. And so have you.
I cry for my son, my Jack. I cry for your son, your Thomas. And I thank God you chose to share your story.
Barbara”
I'll tell you more about how it all went down in the next post.
