Jul 092013 15 Responses

Why We Didn’t Sue Our OBGYN when Our Daughter was Born with Down Syndrome

In light of the response to yesterday’s post, An Open Letter to the USA Today Editorial Board, I thought I would share one of the major lessons which our daughter with Down Syndrome has taught me about life.

2.9 Million dollars. Big money makes big headlines. Last year, when a jury awarded an Oregon couple nearly three million dollars for the ‘wrongful birth’ of their daughter with Down syndrome, it made national headlines. Ariel and Deborah Levy claimed they would have terminated the pregnancy had they known the diagnosis. Accusing the hospital of botching the testing procedures, the Levy’s sued for the estimated expenses of raising a special needs child. The jury agreed negligence on the part of the hospital awarding the Levy’s and their then four year-old daughter 2.9 million dollars.

Two years before the tests in Oregon, my wife and I sat in a similar doctor’s office being told our daughter did not have Down syndrome. Prenatal testing is unreliable at best. While false positives are common, false negatives are not. With general confidence, our doctor could assure us we were fine. Multiple ultrasounds, testing with 3–D imaging, revealed nothing but a normal, healthy girl.

Months later the errors of the test and the oversight of the ultrasounds were known. The different eyes were first noticed by the delivering doctor. The extra spacing between the big toes and the crooked pinky were seen by the nurses. The lower ears and fold through the hands and feet were identified by the pediatrician. Our daughter had the classic signs of Down syndrome. Two weeks after birth, a routine genetic test confirmed everyone’s thoughts.

At the six week check-up, our OBGYN apologized, again. Weeks earlier he had called to check on us and he apologized for not catching the situations. He continued to review records and re-examine ultrasounds. The signs were missed. Maybe he should have looked harder. Maybe he needed additional training. Maybe we were a few months, or years, ahead of the technology that would have easily discovered the situation. Whatever the case, he was sorry.

We were not.

While one couple chose to sue their doctor when their daughter was born with Down syndrome, we chose to write a thank you note to ours. He was, and is, a phenomenal doctor who went to every extent possible to give us good care and when things turned out differently than he had hoped, he apologized. In our eyes he had no reason to do so, but in his eyes he did not make every option available.

We were not angry; we were grateful. The testing error had not resulted in negative outcomes. Our daughter was healthy. That’s the point of testing—to do everything possible to create a good outcome. Testing allows treatments to be formed so health can be gained. A positive test would allow for more precautions, closer monitoring, all to protect the baby and mother. Testing shouldn’t be intended to hurt. It shouldn’t be used to decide if a medical professional should do a destructive act. If the false negative had led to a relaxed pregnancy and things had gone wrong, there might be an issue. But when a false negative led to a relaxed pregnancy and a healthy child, all was well.

Lawsuits should be rare. They should only exist when things go dramatically wrong; they should never exist when things go right. Our situation and the Levy’s situations are similar. Both deliveries happened as they should. Both children were born healthy. However, one child was seen as a burden while the other was seen as a blessing.

This points to a deeper problem within our lives: We are often unable to determine what is good for us and what is not.

In case you doubt that fact, consider the question: Would it be good for you to win the lottery?

“Yes,” we think. “No,” says every statistic and case study. “Try me,” we reply.

Yet what is a fun hypothetical about winning the lottery is a sad reality when it comes to having a child with special needs.

We quickly jump to a conclusion and assume our opinion is right. No one would ask for Down syndrome, so it must be bad. Clearly it’s not ideal. No one should receive the diagnosis of Down syndrome with a shout for joy.

However, having a child with Down syndrome is not a bad outcome.

Yet, when the diagnosis comes, people still assume it’s a bad outcome.

It is sad.

It’s not ideal for the child or family.

But it’s not bad.

We assume it’s bad, in part, because we do not have the ability to judge good and bad in our lives. We are quick to recognize the negative consequences of our child living a different life than we expected, but we are not able to see the positive consequences which are sure to come.

This has taught me a powerful lesson: sometimes our greatest sorrow becomes our greatest blessing.

Much of what we think we know, we don’t. Our ability to foretell the future is not very good. Our assumptions about what is good and what is bad are often wrong. Many times, the cause of our greatest grief can actually become the source of our greatest blessing. This is true for every family I know who has a family member with Down syndrome.

This is why my heart goes out to those who make decisions about the life of their baby when a prenatal diagnosis of Down syndrome is given. Far too many couples assume raising a special needs child will be too difficult. They think they aren’t strong enough. They believe it is better to abort.

Yet nothing could be further from the truth. The truth is that they miss out on a wonderful blessing. They deprive their families and communities from many life lessons which can only be taught by someone with special needs. And they go through life never knowing what could have been if they would have simply accepted what came their way instead of fighting against it.

 

15 Responses to Why We Didn’t Sue Our OBGYN when Our Daughter was Born with Down Syndrome
  1. Ada Reply

    I feel such sadness for the Levy’s little girl; some day she will learn that her parents wanted to abort her had they known.

    One of my greatest blessings was unfolding at the same time, Kevin ….. Today is Keeton’s anniversary. And yes, such sorrow in losing our boys, but what joy and tremendous blessing they were as well and continue to be.

    Thanks for sharing your family’s story. I am honored to call you guys my friends.

    • erica barter Reply

      Ella is a blessing to not only you & Jenny, but to anyone who knows her. Personally though, Ella is blessed to have you & Jenny as her parents. God hand picked the two of you specifically for her 🙂

    • Kevin A. Thompson Reply

      Ada, Thank you for reminding me the anniversary for Keeton is today. I think of you guys often in the month of July. Not to say I don’t think of you guys often in the other months.

  2. Monica Reply

    Evan was surrounded by amazing doctors and had a tremendous amount of prenatal care. Because of his heart defect he was seen by some of the best doctors. They missed it. They missed the ultimate cause of his heart defect. Sean and I have had countless conversations about this. We are also thankful. If we had known, we would have done what most trisomy 13 parents do. We would have prayed he would be born alive and that we may have a few minutes or hours with him. We would not have taken extreme measures to prolong his life. When he was born and did not even attempt to breath, they revived him. We spent six days with our son because we didn’t know. I would not trade those days for anything.

    The whole wrongful life thing just gets me every time. It makes me angry. We were told most babies with Evan’s diagnosis ends up as a miscarriage, most of those who make it past the first trimester die before they can be born. Evan lived for six days. How can that be wrong. It is a miracle, and I am thankful for it.

  3. Carol Reply

    Beautiful!

  4. Renae' Reply

    Thank you for this post Kevin. Amen to loving ALL children. Many of us couples never received the gift of a child. I Believe Every Single Living Child is a blessing and worthy of a wonderful life.

  5. Stacey Reply

    As a special educator, I have had the opportunity to have had many parents share their stories with me. Many times the prenatal tests didn’t indicate a diagnosis. A mother of a child with Down’s told me that she and her best friend were pregnant at the same time. Her friend received results indicating Downs while her own did not. Once the babies were born, reality was reversed. The mother with the positive test had a child without Downs, while the mother I was speaking with, who had the negative tests had a son wih Downs. He was my student, and he was /is a treasured member of their family as he would’ve been anyway. She never regretted that the tests were reversed because she felt they had the blessing of becoming educated about it to support their friends but weren’t fearful about something that wasn’t negative once it occurred.
    I wrote a paper in college 20 years ago about aborting based on prenatal testing with the same position you’ve presented, I find it heartwrenching that there’s still a need for the “argument.”
    When my own son was born and subsequently diagnosed with heart defects that were prenatally undiagnosed (even though we had extra 3D ultrasounds so we could enjoy the excitement of pregnancy) we were asked repeatedly why we didn’t sue, how did they miss it, etc. Our OB also expressed regret she hadn’t seen it and assured us she reviewed everything and still didn’t see it. I didn’t have an ounce of anger because I was so relieved he was getting excellent care and I hadn’t been overly consumed with fear leading up to his birth. In hindsight,(he’s 9, we hardly think of what’s to come for further repairs until we have to) I’m thankful we had that time to focus on him as a new life and not as a “condition. ” The only thing that would’ve been better is to be medically prepared for him upon delivery— he was airlifted to Little Rock—so I would never discourage someone from having prenatal testing. All that said, I think knowing can be a gift so that a family can prepare and have the best outcome for ther child, but I would never presume to think they were 100% accurate. Anticipation is almost always worse than an actual event. Oftentimes, the actual event is ripe with blessings that are sweeter than could be imagined.

  6. Sean Yaffe Reply

    Excellent read Kevin…excellent read!

  7. Jim Reply

    Well said once again Kevin. The Levy’s should be ashamed for filing suit. The jury who awarded that sum of money should be ashamed. The jury mentality unfortunately has become “just give them something, the hospital can afford it.” And that just sets up the next lawsuit and the next and the next. It’s off the subject, but we really need tort reform in this country. Unfortunately, those who make the laws are mostly lawyers.

    • Kevin A. Thompson Reply

      I agree Jim. Maybe if we did that, good doctors would stay in the field and stay in Fort Smith.

  8. Susie Reply

    thank you for your recent posts about DS. I am a labor & delivery nurse and have witnessed babies being born who have DS, but there was no prenatal diagnosis. It’s an uncomfortable situation. You don’t know what to say to the parents. But in every situation, I have seen the infant received with amazing love. You have given me a perspective I’ve not had before, about the good things that are to come for that family. I thank you for that.

  9. Sherry Reply

    People dont understand that any testing is not 100% accurate. I am a doctor and constantly live in fear that if i ever make a lot of money someone will try to sue and take it away. People think that doctors were born with a silver spoon and that their malpractice insurance will take care of everything. They dont see the 12+ years of schooling, living as a poor student, the putting life on hold, having fewer children because you work so much and started a family later…all to respond to Gods calling to be a doctor and help people. Plenty of people make some kind of mistake…mortgage brokers, home inspectors, financial planners/ investors…but do people sue? No, they are simply told mistakes happen, things happen, nothing is 100% predictable. But when a doctor is involved? Sue.

  10. […] However, as some try to swing the pendulum away from only negative news regarding Ds, we run the ris... kevinathompson.com/life-lesson-from-ella-its-okay-to-laugh-and-cry

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