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Seth is a Perfect Child

H. Boehm, MD

Boehm is Professor of Obstetrics and Gynecology at Vanderbilt University Medical

Center,where he is former Chairman of the Ethics Committe as well as former

Directorof Maternal/Fetal Medicne. He is author of " Doctors Cry, Too: Essays

fromthe Heart of a Physican. " Contact Dr. Boehm at FHBoehm@...

Over the past 38 years, I have participated in the care of thousands ofpregnant

women and have attempted to answer the many questions that eachpatient

invariably wants answered.

While these questions are often specific to each patient's pregnancy, onecommon

question usually surfaces at some point in our discussion, " Is mybaby OK? "

Because it is so difficult for me to define " OK, " thisquestion has always been a

tough one for me to answer.

At the heart of this question lies a pregnant patient's desire to know if

herunborn child will be perfect (normal and healthy), a very reasonable

concern.Once again, however, defining perfect is not an easy task.

Most pregnant women do not realize that approximately 2% of the 4 millionbirths

each year in this country involve the delivery of a child with asignificant

congenital defect. That translates to one out of 50 births! Thesebirth defects

include hundreds of different types of anomalies such as spinabifida, heart

abnormalities, limb deformities, metabolic disorders andchromosomal

abnormalities such as Down syndrome.

When you consider that each of us begins with the union of sperm and egg,

whichcreates one cell and this one cell continuously divides to create the

billionsof cells that result in a living child, it is truly a miracle that any

of usare born, much less that we are born perfect.

It is with this in mind that I explain to patients that each birth is a

miracleand that the uniqueness of each of us is what makes us perfect. I also

attemptto explain that normal is in the eye of the beholder. The gift of life

can be " perfect " even in the presence of serious problems. One year ago, mynewly

born grandson, Seth, was to help me understand this from a differentperspective.

Seth was born with Down syndrome.

Down syndrome was first described by Dr. Langdon Down in 1866 as acondition

in which a child is short in stature with mild to moderate mentalretardation, as

well as often being associated with other physical problemssuch as heart

defects. The risk of having a child with Down syndrome increasesas women age. At

20 years of age, the risk is one in 2,000 births and at 35 itis one in 365. At

age 40, the risk of delivering a child with Down syndrome isone in 100.

I have spent my entire career counseling patients on the risk of delivering

achild with Down syndrome. But until the birth of Seth, I had never

beenconfronted on a personal level.

My son Tommy and his wife were expecting twins - a girl and a boy. Ivividly

remember the excitement as and I waited during the delivery and cried with

joy as we each held a child inour arms in the recovery room. Marly and Seth were

perfect. What dreams andexpectations we held for these two precious bundles of

joy!

Several hours later, however, we were confronted with the fact that Sethcarried

a diagnosis of Down syndrome while his sister Marly did not. Our familywas

filled with emotions, from the high that came with the birth of the twinsto a

low at learning of Seth's disability and knowing that he would bedifferent with

possible life-long problems.

Later that evening, holding Seth in my arms and gazing into his angelic face,

Iwas overcome with unconditional love for my grandson. As the tears rolled

downmy cheek, I understood that despite his diagnosis, to me and those who

lovehim, Seth is a perfect child, to be loved and nurtured, the same as his

sisterMarly. Our dreams and expectations for him may now be different from those

forhis sister, yet they are dreams and expectations nonetheless.

To me, Seth is perfect. His 1-year-old smile lights up a room and his

laughterbrings warmth to all who are near. He loves to cuddle and gaze into the

eyes ofthose who hold him and he embraces his sister with what can only be

describedas pure affection and love.

Seth is one of many children who are born with birth defects and

complications,yet, like so many others, Seth has embarked on a journey we call

life. Thatlife will be filled with challenges for him and his family, yet that

is alsotrue of each of us as we embrace life with its ups and downs.

As we enter a world in which more genetic information will be available for usto

consider in selecting a perfect child, I hope we have room in our world

andhearts for those like Seth who are challenged and different, because

challengedand different can still be perfect.