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

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