Hello, my name is Tara Schleifer and I oppose Senate Bill 636. I am a married stay-at-home mother to my son Isaac who is here with me today.
I was the one who said NEVER. I will never abort this baby for any reason. I love my husband, we have resources. I was a primary caregiver for my lifelong-disabled mother and she recently passed away in our home as I held her hand whispering all the names of people who loved her. There is nothing that could ever happen to change my mind, Obviously, I can take on whatever happens. Don’t we all feel that way about life’s challenges? I came to learn sometimes life breaks you.
My husband and I have struggled to build our family for 12 years. Last February we were shocked to find out we were pregnant with no medical assistance. At 17 weeks, jubilation quickly gave way to feeling like I had been set on fire.
Our baby was diagnosed with a congenital heart defect called complete AVSD. This would require multiple, open-heart surgeries starting in infancy. There would never be a complete recovery. Amniocentesis confirmed Downs Syndrome, which I came to learn can be a cluster of chronic physical problems as well as varying degrees of intellectual impairment. No one can say which ones, how many at the same time or how severe. Each of these is a very serious condition on it’s own. Things like Leukemia, nerve, joint and muscle weakness problems that can cause paralysis or death, digestive problems that lead to chronic vomiting & constipation or even an obstructed bowel that would require corrective surgery immediately at birth, are examples of some of the associated health conditions.
His Level II Ultrasound showed “Echogenic Bowel” which indicated he would likely have bowel problems. I learned, instead of eating and growing he would have a condition called “Failure to Thrive,” due to the combination of weakness from lack of bloodflow before his heart surgeries, combining with an in-ability to take in enough air to breathe from overall muscle weakness, and his reliance on a feeding tube and the possible recovery from the obstructed bowel. As a mother, your first responsibility is making sure your baby eats. Watching helplessly as he throws up everything he eats – EVERY MEAL – EVERY DAY is excruciating for you and traumatizing for your baby. Especially when doctors tell you he has “Failure to Thrive.”
Additionally, my blood work revealed dramatically high levels of certain proteins—so much so, initially my doctors thought the results were wrong and we needed to retest. I learned these correlated with placenta previa and abruption, as well as intra-uterine infections. These conditions were likely to develop as the pregnancy progressed and doctors told me this was a high-risk pregnancy and I could lose my life. Letting Isaac lose his mother at 3 years old and making my husband become a single dad – to handle all of this alone, was not a possibility I was willing to entertain.
Learning that our baby would most likely die before he was a year old, and that being AFTER multiple, traumatizing medical interventions, seemed inhumane. To love your baby and have no way to COMFORT him, hold him, tell him you LOVE him, or be able to convey that all of this pain and scary machines were intended to save him was unimaginable. Knowing he would be on a ventilator was heartbreaking. When my mom was on the ventilator, the nurses told me it felt like a feeling of being constantly gagged with no way of stopping it. You are too weak. If they give you the pain meds so you don’t feel that sensation, you could lose your life so they don’t gamble. As soon as I learned about the mandatory ventilators, I just about DIED myself.
If he survived, our baby would require lifelong, daily care. Knowing our son Isaac would grow up to have to oversee his care after we were no longer able, while he was just starting his own life, career and family was unacceptable. Nor could we allow Isaac’s childhood to be dominated by medical crisis after crisis---just like my childhood with my mother’s medical needs at the forefront.
Whether or not our baby survived, the experience would bankrupt our family before his first birthday, emotionally and financially and logistically. I’ve read nightmare stories of everything I’m describing to you on the public websites on Babycenter.com. And the experience would take us away to the hospital a lot, and emotionally, all the time, causing a permanent fog of just surviving each day. It would literally rob Isaac of his childhood, as I know first-hand.
For us, 7 weeks of devastating desperation followed the diagnosis as we raced to understand everything we were dealing with. With SACRED time, I searched my soul, talked to as many medical experts I could and really thought through every consideration. Terminating was the last thing I wanted to do, and ask the medical professionals who treated me: I went in howling like a wild animal, kicking and screaming in both physical and devastating emotional pain.
Nothing mattered. Every person in my life, of all political stripes offered their support confronted with my reality. Only two, stridently up until the last moment, lobbied hard for letting go to God’s will and trusting, saying Abortion is Murder. And what you’re doing makes me physically ill and want to vomit. One was a best friend. Another, a woman from the website of my nightmares who’d lost a child to this identical circumstance. Nothing anyone said to me was worse than what I said to myself.
The only comfort to be had was that I carefully and methodically thought through everything. I considered every person in the situation, including my baby, and realized the only ones I could save were the living. I literally could not embrace the WORST to be able to HOPE and PRAY for the best. God will have his judgement on me. I have to live with myself.
Many women will find out about these anomalies at their routine 20 week ultrasound. It would be cruel to force a woman to decide on termination before allowing her to research and think through her decision. It is immoral to prevent her choice. This ban would prevent women from seeking out second opinions on the diagnosis.
If this ban had been in effect with our dear Christopher, I know we would have terminated immediately. And I know I would wonder, everyday for the rest of our lives if the tests were wrong and we mistakenly aborted a perfectly healthy baby? I would never recover from that, emotionally destroyed and living in perpetual grief.
To me, deciding to end a pregnancy when the baby is dying is similar to taking someone off life support when it is clear further medical care would be futile and painful. It doesn’t make sense that parents are able to make this decision about a baby who is on life support after being born, but can't make the same decision when the baby is inside the womb.
All of these situations are gravely serious medical situations. Each family dealing with this trauma and emergency deserves the time they need, to research, to search their soul and seek their own religious counsel. Each family has the right to follow their own conscience in making this most profoundly personal family decision. There is no black & white, right & wrong decision. All of it is awful.
This is the ultimate in invasive government intrusion into a family’s life. Government mandating a mother and wife to risk her life, her ability to mother and to force a family into bring a permanently disabled child into the world against their conscience and forcing the baby to endure immense suffering. This is government directly responsible for devastation of many families---financially, emotionally, and logistically. Plunging them into bankruptcy, divorce, loss of their ability to work to provide for the family as they provide care for their child, and for some homelessness or suicides. Some of them even abandon these children at the hospital—I am sure out of complete duress.
The VA Legislature should not be in the business of compounding human suffering.
