My Testimony Against Texas HB2364

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If you are a regular reader of this blog, some of this may sound familiar. In fact, this is a Frankenstein’s monster cobbled together from my previous blog posts.

It took me 36 months to get pregnant.

36 months of disappointment.

36 months of feeling like a failure.

36 months of hating my body.

Up until December of 2012, I thought that infertility would be the worst of my problems. I thought that getting pregnant would be the hard part. I thought that getting pregnant would be our happily ever after.

The positive pregnancy test finally happened for me in late September. Little did I know that my child had already developed a serious neural tube defect that would ultimately force me to make the most horrible decision that any parent should be forced to make.

I spend the first sixteen weeks of my pregnancy blissfully naive and unaware. I thought life had a pain threshold – that there was a limit to just how much suffering a person has to endure in a lifetime, and I stupidly thought that infertility met my quota.

I then I got the ultrasound that showed a serious birth defect – spina bifida. My OB started mentioning other words that flew right over my head – myelomeningocele, ventriculomegaly, lemon signs, banana signs, bilateral clubbed feet, Chiari II malformation, hydrocephalus – but I was numb.

Spina bifida. So that meant that my daughter would have braces. Worst case scenario: a wheelchair. Not a big deal, right?

Wrong. He then explained the seriousness of what those words meant. Shunts. Pre-natal surgery. Brain damage. Paralysis. A catheter. Allergies. Poor renal function. Bladder and bowel problems. Pressure sores. Possible tethered spinal cord. Learning disabilities. Possible speech concerns. Possibility of blindness.

The specialists that my child would need include a neurosurgeon, a neurologist, a urologist, an opthamologist, physical therapists, orthopedic surgeon, an orthotist, and a physiatrist. Our “team” of specialists.

I felt like I was Alice, falling down the rabbit hole.

I never expected a perfect baby – I know that no such thing exists. I just wanted my baby to be healthy, to have a chance at a life worth living. I know there are those out there who are disgusted with my audacity to judge my unborn child’s quality of life, but forcing my daughter to live even with the best case scenario diagnosis felt like a condemnation to a lifetime of suffering, for however long she would live. I just don’t think that making the choice to carry to term with such a severe non-fatal diagnosis is ethical or compassionate.

I’ve heard people say that THEY love their baby, no matter what, which insinuates that I don’t love my baby. Nothing could be further from the truth. After three years of battling infertility, of desperately wanting this child, we made the most difficult decision possible out of love.

I wonder if you understand how cruel life can be sometimes? That your reality isn’t universal? That just because you see a happy smiling six year old child with a disability at Denny’s after church on Sunday doesn’t mean that is his reality all the time? That when you read about that “miracle baby” on your pro-life webpage, that there is a reason that she is called a miracle – because that’s not the norm?

Do you understand that for some people, death is a welcome relief? That no matter what “modest proposals” you might suggest, sometimes preventing those lives would be the best route to take.

Do you understand what a lifetime of pain means? I’m not talking about pain that be solved with prescriptions – I’m talking about long term pain that can’t be controlled. That no matter how many surgeries a person goes through, there is no promise that the condition can be fixed, or that a new side effect won’t rear its ugly head?

Do you understand what long term treatment costs in a single year? Over a lifetime? That not all insurance plans are created equally, and that experimental treatments aren’t covered? That pre-existing conditions and lifetime caps are very real issues that some people have to worry about?

Do you understand that most disabled children still go through puberty, and that they can be at a disadvantage for predators because of this? Have you ever talked to a mother who had to put her severely retarded 15 year old daughter on Depo Provera – not to stop the menses, but to stop a pregnancy in case she was ever raped? When you have to pay people to be caretakers of your child, you can no longer pretend that the world is a merciful place.

You must not, because I can’t believe that people willfully choose to be that cruel.

I know that for me, the best gift I could have given to my daughter was prevention. I don’t understand how anti-choice advocates scream about fetuses feeling pain during an abortion, but don’t seem to give a damn about the pain that infants feel, the pain that children feel, the pain that the families feel.

Most people who have abortions after 20 weeks do so because of a poor prenatal diagnosis that they discover at the 20 week ultrasound. I don’t understand the intent of this bill – it sounds to me like it is there to punish these women into carrying sick children to term, regardless of whether how much pain the infant will be in upon birth. Some infants will be still born, some will die painfully minutes after birth, and still others will be “saved” by science only to endure operation after operation and live in medical centers.

Some of us want to shield these babies from “inhumane and unnecessary pain” as well.

It’s cruel to the mothers, the fathers, the rest of the families, and most of all, to those precious babies.

The reason I am pro-choice is because I value life so much.

I suffer from infertility, and on January 2nd, I started the new year by terminating my pregnancy to save my child from suffering.

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6 thoughts on “My Testimony Against Texas HB2364

  1. I stumbled across your blog today after reading post after post on the babycenter TFMR board. I too am faced with this horrible decision, and your blog made me cry. Thank you for writing this. It’s one of the most touching, truthful letters, and everything you say sums up exactly how I feel about our right to choose.
    – Ginny

    • I am so sorry you found yourself here. I hope that as my blog matures that my posts become more hopeful and positive. I know that I think about my daughter every day, but it isn’t as painful as it was even three weeks ago. I think that I’m moving into a stable acceptance level – I don’t really feel the anger, denial, and bargaining that I used to.

      I hope that you can find done comfort in familiarity in my posts. Hugs!

  2. Hi

    I just wanted to pass on a thanks for sharing. We are coming up to our one year anniversary of losing our son at 20 weeks pregnant due to a genetic disorder.

    It was the toughest decision of my life, but we decided to endure the pain rather than him. Who knew a mothers love could be so strong.

    I think of him every hour of every day and he is just as bigger psrt of my family has my other little boy.

    Keep posting !

  3. I have also made this painful decision. I feel like you are writing my words. I go back and forth all the time about the decision. We found out at 18 weeks that our son, Van, had arthrogryposis, affecting all four limbs. We spent 5 weeks agonizing over what to do. This is such a gray diagnosis. Lately, I have been going through a tough time. It helps to know that I am not alone. We lost Van December 2011. I wanted my child. I didn’t want him to suffer. I am suffering. Thank you for writing this blog. You are writing the words I don’t have the strength to share.

    • I am so sorry that *this* is our common bond. I know it doesn’t help, but it’s just not fair.

      I only hope that the people who make the decisions are able to see beyond their own personal experiences and develop a modicum of compassion.

      I’m also sorry to hear that you are going through a rough patch. I’m not having the emotional breakdowns that I had a few months ago, but I think I’m experiencing more subtle sings of depression and/or anxiety. The teeth grinding. Avoidance behavior. Impatience with others. But the blog has by far been my best therapy, especially since I keep it anonymous and don’t widely share it with my friends and family. It allows me to be honest with myself, as ugly as that honesty might be.

      I’m really dreading Mother’s Day and my EDD on June 5th. I think I may have to refill my anxiety pill prescription just in case.

      Hope that you start getting more smiles soon!

  4. Pingback: ordeal of the bitter waters, part two | Defeating the Dragons

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