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.
I had a really hard time with the Levy wrongful birth case, and I’m sure a lot of my difficulties revolve around my own personal struggles with infertility. That said, I am with you, wrongful birth cases are wrong in my opinion. No, I don’t think a doctor should be allowed to lie about a diagnosis, but we have a LONG way to go in educating doctors in how to deal with families facing diagnoses – whether fatal or not.
Like you, I cannot subscribe to the idea that a child that dies within hours of his birth had no value, and these lawsuits say that it’s ok for a parent to say they wish a child had never been born and reward them for it. What happens years from now when a sibling reads the story of how mommy wished their brother had never lived? What sort of damage does that do? What about the little boy in the Florida case (linked in the NPR article) who’s parents sued because he was born with only one limb? I can only assume from the article he has no developmental delays and at some point in his life will be able to read about the fact that his parents would have aborted him simply because he had no arms and one leg.
I also believe that a big part of the ownership for the high incidence of abortion among women with “less than perfect” prenatal diagnoses falls on the shoulders of medical professionals who fill women with misinformation, some of them outright LYING about what a diagnosis means for a family. Regardless of your stance on abortion, it is IMPERATIVE that doctors start taking responsibility for disseminating accurate and balanced information on a child’s particular diagnosis.
It’s one of the reasons we refused pretty much all prenatal testing when I was pregnant with the twins, and if I’d been able to get pregnant again we’d do the same. It wasn’t going to change whether or not I carried to term, and other than preparing us for something that could have been coming, what would be gained by the information? For us, nothing. We asked God for a child. He saw fit to give us two. They were perfect no matter what, and they were ours.
I have a friend who’s daughter is autistic. Not yet detectable in utero, but likely within I lifetime I would imagine this will become possible. There’s a great play called “Twilight of the Golds” that examines what happens to a family sometime in the future when whether or not a child is going to be gay can be detected in utero. Where do we draw the line?
I feel sorry for these families but I don’t feel sorry for them because they’re raising children they wouldn’t have had they known more medical information about their children early enough to make a different decision. I feel sorry for them because they can’t move beyond their own grief to see value in the life of a child with Down syndrome, with no limbs. I feel sorry that they will never truly know the joy of their children, because they are too lost in what they were deprived of to see what they’ve been given.
I agree with pretty much everything you said here, but I wanted to highlight two thing in particular. One: doctors DO lie, but the default is to lie to encourage abortion, not prevent it, contrary to what the NOW spokeswoman Rinker indicated. Do doctors know they’re lying? Maybe. Maybe not. But inaccurate, misleading information is provided to parents, and that information is used to make the decision to abort all the time. Before we give press time to people screaming that doctors might *theoretically* be tempted to lie, let’s address those doctors who are already doing it as a matter of course.
The other point I wanted to highlight is the “Where do we draw the line?” Sex can be determined in utero today. What if a parent wants a boy, and the doctor tells them their baby is a boy, and the baby ends up being a girl? Is it okay to sue for wrongful birth then? Reasonable people would say no. A need for financial resources that you hadn’t anticipated isn’t justification for a lawsuit.
For all 3 of my pregnancies I’ve been offered a whole range of tests. I’ve denied them all. I personally think it should be manditory that doctors offer these tests. When I’ve denied them, I’ve signed paperwork. However, I can tell that even those who accept it would have to sign the paperwork too. After that, I don’t think the doctor should be blamed. It’s up to the parents to decide if they want the tests or not. If they choose not, then it’s out of the doctors hands.
I’ve had four pregnancies – three of which reached at least the middle of the second trimester – and three different ob/gyns during that time. ALL of them offered prenatal testing, and I declined testing only with the last pregnancy. I don’t believe that the tests themselves are the problem. As I pointed out, they only provide information, and none of it is guaranteed. It bothers me that people expect so much from doctors – they are only people, and as advanced as modern medicine is, it’s still about treating individuals. As a society, I believe we have grown to expect that anything save the biggies – cancer! – is fixable with a co-pay and a prescription.
I don’t know, Andi – I truly believe that every life is worth celebrating. I can’t believe that the Hoffmans had absolutely no joy with their son. I have to wonder if the genetic link that caused their son’s illness caused some guilt, making them think they’d caused their son’s pain, albeit unintentionally. Looking at this precious little soul, thinking that you might have caused his pain – would be excruciating. However, would preventing this child’s birth ease that guilt? I doubt it.
I, too, refused invasive testing when I was pregnant. I would not have chosen to abort regardless, so it seemed pointless. Anything that could be done – to me – in the way of testing was fine (an amnio – no way). My babies were MINE, and nothing would change that.
My mother – when pregnant with me – suffered with placenta previa and placenta abrupto. Her water broke in the fifth month. Her doctors told her of their dire predictions – and suggested a therapeutic abortion. She dealt with constant bleeding, weekly transfusions, the threat of both of us dying. The doctors said that IF I lived, I’d be severely “damaged”. This was MANY years ago – and in those days, when a child wasn’t expected to live – or to go home with the family – no one was allowed to see the baby. She was told to just go home, forget that she’d had a child, and she could someday “have another”. Surprise….I kept breathing….
I wish I still had my mother – as I’d thank her every day for her strength, her faith, and her belief that every child should be celebrated.
I agree with you that they surely had to have found joy in raising Jake. My gut tells me that their lawsuit was motivated by bitterness over their lot and a desire to relieve their pain. Will money do that? I don’t think so. Will making someone else pay do that? I doubt it.
This is slightly off topic but I’m hoping you’ll see the intention behind the words here. As someone with CP the “CP lawyer” commercials on TV drive me insane. Mistakes happen but not all of them can be prevented. And honestly every time I see something like that I either get super angry or really upset.
I agree wholeheartedly, Sarah. It’s one of the many reasons I despise former presidential candidate John Edwards – he built his career on CP malpractice cases (that whole cheating on his wife while she had cancer thing also did not endear him to me 🙂 ) I was actually approached recently about cross-promoting this blog with a law firm and politely declined.
So, the Hoffmans would have preferred to kill their child before birth, would have been less unhappy in the belief that before birth the killing was merciful? The sense of control combined with the distortion of not-Life before birth creates these situations.
Control is a key element in these types of situations – the Hoffmans likely do believe that things would have been better for them if they’d been able to control the situation from the beginning. But, of course, control is a myth.