On Tuesday morning, I heard a story on NPR about wrongful birth lawsuits.
Two states are currently considering laws to prevent parents from suing a doctor who “fails to warn them about fetal problems.” Find a transcript and audio of the story here. The debate will continue to wage on about whether or not these suits are appropriate – I’m solidly in the No-They-Are-Not category, as I’m sure you might guess, but if you want to read more about how I feel on this topic, read my prior post on the recent Levy wrongful birth case.
The NPR story covered both sides of the debate, and a few of the quotes from those who oppose these laws bothered me. A lot. First, from Sharon Hoffman, whose son Jake was born with Tay-Sachs disease, which is untreatable, and died at age two:
“The only thing that you would be bringing this child into the world to do is to suffer. And die.”
I’d say that’s true – for all of us. Death may come at the age of eight minutes, eight years, eighteen years, or eighty. No one is guaranteed a long life free of suffering. But what I found deeply tragic about her words is they seemed to indicate that her son’s life had no purpose.
Does the fact that Jake Hoffman was never able to become a doctor, or a published author, or a professional athlete, mean that his life was pointless?
A friend of mine, Amy Salter, gave birth to twins while I was pregnant with Nathan. Because of twin-to-twin transfusion syndrome, the weaker twin, Jacob, lived for only 61 days – all of them in the neonatal intensive care unit (NICU). Some people would look at their situation and think that resources were wasted and that Jacob’s life had no purpose. But Amy and her husband, Ken, don’t feel that way.
As a result of their experience, the Salters established the Jacob’s Wings Foundation to raise funds to establish special private rooms in NICUs for families of children who have recently passed or who are near death. This room will allow parents to embrace the last moments with their baby as intimately as possible, rest in the same room as their baby, grieve as they wish, sheltered from the normal distractions and disturbances of the unit, and abate their own worry of how their grieving may affect other parents.
Jacob Salter had no achievements to speak of in his short time here, but his life did, and will, make a difference.
Another quote that bugged me was from Kari Ann Rinker of the National Organization for Women:
“I believe [the new law] would allow [doctors] to lie about the results of an amniocentesis or simply opt out of even performing an amniocentesis that would normally be a part of standard care.”
Should doctors be allowed to lie? Of course not! But in this day and age, any mother with a computer and five minutes of curiosity can determine not only what tests are available, but when they are typically administered. If a doctor acts as a stingy gatekeeper for a test that a mother wants to have, she can choose a different doctor.
But in my experience, and anecdotal evidence suggests it is typical, doctors offer an excess of testing, not a deficit.
The doctor who delivered Nathan, who respected our decision not to test, offered prenatal testing multiple times – he wanted to be sure that we were absolutely certain of our decision. My previous doctor, who delivered Sarah Kate, sent us to the University of Alabama at Birmingham genetics department for non-standard testing based solely on the fact that we’d had a child with triploid syndrome – a random and non-hereditary condition – in the past. Neither doctor withheld testing; they pressed for it.
I’ve heard parent after parent after parent tell me how they were encouraged to abort their child with Down syndrome or other “fetal problems,” which is not surprising, as a baby born with a serious disorder, disease, or chromosomal abnormality is more likely to have a difficult birth. If something goes wrong, the doctor will be blamed, so it’s in his or her best interest to find out as much as possible and to share that information with the parents. And I have yet to meet a parent whose doctor pressured them NOT to abort their child with Down syndrome.
But never mind that, because Rinker’s statement misses the point entirely: doctors aren’t God. Prenatal tests only provide information – they don’t produce results (and the information they provide isn’t perfect). Tay-Sachs, Down syndrome, and missing limbs don’t happen because of something a doctor does or doesn’t do, yet families have financially benefited from wrongful birth lawsuits for all three of those diagnoses. Doctors shouldn’t be blamed for a diagnosis that couldn’t even have been made in utero not very long ago, and still can’t be treated.
What all of these people fail to mention is that childbirth carries very real risks – to the mother and to the child.
The final quote tugged at my heartstrings, as I’m sure it did yours if you listened to or read the article. Steven Hoffman, Jake’s father, said,
“My heart is broken, and it is broken for the rest of my life, and it’s something no parent should have to go through.”
My heart breaks for the Hoffmans. No parent wants to face the death of a child, but unfortunately, in our imperfect world, children sometimes die – fatal diseases, violent crimes, and unfortunate accidents occur each and every day. No, it is not pleasant, but the hard truth is that death is a part of life, even the death of a child.
When you’re a parent, heartbreak is the name of the game. It is the risk that you take when you choose to conceive a child.
The “grass” possibility of ending Jake’s life before it began may seem greener to the Hoffmans, but if they loved their son – and I’m confident they did – then I assert that they would have been heartbroken no matter whether they chose life or chose an abortion. I, too, once had a child whose diagnosis guaranteed she would not survive childhood. Unlike Jake, my child never took a breath, and I never held her in my arms. It was a gut-wrenching experience and I still agonize over it thirteen years later.
Steven Hoffman believes that if lawmakers had firsthand experience, they might not find it so easy to pass laws restricting wrongful birth lawsuits. I believe that if the Hoffmans had the attitude of parents like Amy and Ken Salter, they might feel that their son’s life had more meaning and purpose and they might have felt more positively about the time that they did have with him.