Today I'm writing about a personal gray area, because I have a personal investment in this issue, twice over.
I want to share the voice of Dortha Biggs, who has a 48-year-old, multiply disabled daughter. Biggs contracted rubella (German measles) when she was just 2-1/2 weeks pregnant. When her daughter Lesli was eight years old, she sued her doctor for failing to diagnose the rubella, because if she'd known she had it, she would have had an abortion. On February 19, 1975, the Texas Supreme Court ruled, in front of an audience of 60 women who had shown up to support the case, that a woman could sue her doctor for a "wrongful birth." Now Biggs has come into the spotlight again.
A Texas state senator (Brandon Creighton) has introduced a bill that would ban such lawsuits, overturning the precedent Biggs helped set. He also invoked her case, saying wrongful birth lawsuits promote abortion. Biggs is outraged, because neither Creighton nor any other politician has reached out to her or asked about Lesli, who has suffered pain, discomfort, and extremely low quality of life all her life. Biggs dedicated her life to special needs children for more than 30 years, did her master's thesis on rubella and its devastating effects on pregnancy, and continues to be tormented by what has happened to her and her daughter. "I would have given anything to have never been born," she says. "Because had I not been born, she would not have been born and suffered this." She wishes she could have terminated her pregnancy, had she known the risks she was facing. Lesli is blind and deaf and has cerebral palsy, allergies, seizure disorder, and autism. Her annual care costs $200,000, mostly covered by Medicare and Medicaid.
Here's how I am personally invested in this case:
- My mom had rubella when she was pregnant with me, but she was aware of the risks. When I was born with a cleft lip and palate, along with a club foot, the doctor would not show me to her at first because he wanted to warn her...but I'm sure he didn't expect her delighted response. She tells me that she was just so grateful that my birth defects could be repaired. My eyes fill up knowing that as an "unperfect" baby, my parents welcomed me into the world unconditionally and full of love. They had to see me go through multiple surgeries and hospital stays as a baby and child, in addition to having to force a screaming toddler to either insert or remove a speech appliance from her mouth (which I thought was an instrument of torture!). When we had our own medically fragile child, I had an ever greater sense of gratitude and empathy for what my parents must have gone through.
- My oldest son was born at 24 weeks gestation, just on the verge of viability. I also had an unplanned pregnancy at the risky age of 41. But as I wrote in February 2011, I'm avidly pro-choice and I also support parental consent for life-saving resuscitation measures of extremely premature babies. In our case, first we decided we wanted life-saving measures because we held tight to hope that our son would survive. Then later we chose not to have amniocentesis when I was 38 and 41 so we could avoid the risks of premature birth or late-stage miscarriage, but also because we trusted in whatever would happen.
"I have stood over her bed for hundreds of nights watching her suffering. If you have not experienced this heartbreak, you have no right to judge...I could never have said I want her to experience this -- just to be born. Anyone who would say they thought that was the right thing to do has not stood and watched a child suffer like this."Biggs points out the irony that the first thing Republican politicians begin slashing is money for programs serving those with special needs or mentally ill. She says they care only when a child is in the womb, not after. "They don't love my daughter. They don't know my daughter," she says.
My heart is with Dortha Biggs and her daughter Lesli, and for all those who advocate for disability rights and medical ethics.
Read more of my "I Was a Stranger" entries here.