I (Robin) was asked by Texas Alliance for Life testify before a Texas Senate committee that is considering a bill that will close the door for ‘wrongful birth’ lawsuits. In other words, parents can sue doctors, nurses, hospitals (any medical person or place) because the parent wasn’t notified of their child’s disability and would have aborted if they would have known. They can sue because their child was ‘wrongfully born’. This is what I will read before them:
Erica and I were expecting our first child in September of 2001. We were completely excited about the potential. A home birth was planned. We had dreams of our child taking her first steps. Growing up with friends at church. Getting her driver’s license. Going to college. The list goes on and on.
After we crossed the 30th week of pregnancy, we visited the Austin Community College Nursing program for a routine sonogram. Our thoughts were simple. Let’s just make sure everything is ok. We were convinced that there would be no complications because Erica’s pregnancy had been trouble free. In fact, she didn’t even suffer from morning sickness, pains, or any other common attribute of pregnancy. The sonogram was taking a very long time, and they weren’t cluing us in on the fact that they were seeing something very abnormal. Almost an hour passed when the director of the program came in and told us that they would have to send us to a specialist because “they weren’t seeing something that they should”.
That afternoon we visited Perinatologist Dr. David Berry in Austin, TX for the official ruling. All our dreams and visions for our child came to a crashing halt when we sat in Dr. Berry’s office. His team had viewed our sonogram and confirmed the fears of the ACC team. Our daughter’s brain was almost non-existent. There was so much fluid in her head that the only portion of her brain was crushed against the skull. The prognosis was brutal. “Your daughter might not be born alive or live very long after birth. She could possibly be blind, deaf, and severely disabled. Most likely, there will be learning disabilities and mental retardation.”
We were given two options. The first option was to schedule a C-section at 38 weeks and go through with the original plan of life with all the associated negatives. The other option was to have a late term abortion. These were not legal in Texas, but we were given the option of traveling to Kansas or other states to end the life of our daughter before she was born.
It took us about 10 seconds to make that decision. We scheduled the C-Section.
She was born two days after Thanksgiving, November 24, 2001. After birth a MRI revealed that her condition was actually much worse than they originally thought. Instead of only hydrocephalus, she, also, had Alobar Holoprosencephaly. The brain surgeon told us she could be expected to live anywhere from 6 months to two years (if she was lucky). He gave us another choice. Surgery would ‘prolong’ the inevitable. Choosing to install a shunt in her brain would ease her pain and prolong life to two years, or we could choose not to install the shunt and let ‘nature takes it course in the next few months’.
It took us about 20 seconds to make this decision. The surgery happened the next morning.
While in the hospital, one doctor actually reported that our daughter would not have a ‘meaningful life’. After obtaining the medical reports in 2012, we actually saw those words in the official records. Our daughter “would not have a meaningful life”.
Kennady celebrated her 11 year birthday in November. She is the happiest fifth grader you have ever seen in a wheelchair. She speaks to us with a contagious smile.
Your heart will melt when you take her by the hand, and she starts giggling. She doesn’t know about the tension in the Middle East. She has never met a stranger and has no clue that people stare in the grocery store. You would have an extremely difficult time making a case for a “meaningless” life right now. She speaks volumes without words to all who will take the time to get to know her.
Suing a medical professional because your child was born with a disability is like suing CBS Sports because the 49ers just lost the Super Bowl….as if the network knew definitively who was going to win or not. If you had known your team was going to lose, you would not have watched the game. What does it say about your dedication to the team if you will drop everything at the sight of difficulty? If all odds are against the team and it looks as though they will lose, the team will still want to play and give it their best (regardless of what the TV network or the fair weather fans have to say about it). The game is really up to the team. The disability and chance for life is truly owned by the child. It is his or her right to have a chance at life to live or die naturally. Doctors are often wrong. Prognoses are often wrong. Who are we to usurp our authority into a situation where only God owns the rights?
One of the biggest oxymorons has to be a: “selfish parent”. Why do we ‘have kids’? Are they for our benefit? Are they so we can have a toy or someone who gives love to us? Are we satisfied because they are smart or because they score the winning goal? Are they beautiful because they fit the American/Hollywood standard?
As parents, we take ALL responsibility for that child until that child has reached the age of personal responsibility. If that child never reaches that age, then you, as the parent, must own that responsibility. That is part of living in the world in which we live. Things don’t go as planned. Hurdles, mountains, and deserts are to be crossed. When these challenges come our way, we don’t look to the nearest scapegoat in order to make ourselves feel better or skirt our responsibility. No, we do the right thing. We love our kids and raise them to be all they can be. We learn from them. We are changed into better people because we have allowed brokenness to be meaningful.