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Cleft-Craniofacial Community Stories

The Sprunt Family

Diane and Brinkley Sprunt’s Story—Ultrasound Diagnosis

Laura, Timmy, and Barbara

When I was fifteen weeks pregnant with Timothy, our third child, my husband and I learned through an ultrasound that our baby had a bilateral cleft lip and very likely a cleft palate. As there was a strong history of cleft lip and palate in my husband’s family, the diagnosis was not a complete surprise. Apart from the cleft, there were no other problems visible on the ultrasound.

While disappointed, we were relieved to learn that our baby would most likely be healthy and otherwise normal. We knew that the clefts could be completely corrected with no longstanding effects.Unfortunately, our obstetrician did not share our optimism. The following day, he called me at home to offer his “condolences.” I explained that we had already begun to learn about cleft palate and we were feeling positive about the outcome. “Nonetheless, if the child is unacceptable to you,” he continued, “it isn’t too late. You still have options.” He was obviously suggesting that we terminate an otherwise normal pregnancy because of the cleft.

At my next appointment, this physician, a well-respected member of the medical community in a large progressive city, was even more adamant that we consider terminating the pregnancy. As he lectured, it became clear that he knew little, if any, accurate information about cleft lip and palate. He spoke with complete ignorance and used his lack of knowledge to try to convince us to end our pregnancy. He kept telling me that it wasn’t too late.

Timmy, newborn

One by one, he listed all of the dire (and generally incorrect!) consequences we could expect if we had this baby. He told us that we would need to feed the baby with a gastric feeding tube for the first year. He said that strangers would stare at him and make rude comments. He also said we would need to obtain psychological counseling for our older children (ages five and seven at the baby’s birth) to help them overcome the effects of having a “defective” sibling. Last, and scariest of all, was his statement that it was possible that the baby would be born with more severe and devastating defects. This pronouncement came despite a total absence of any physical evidence (from several high resolution ultrasounds) and no genetic history of any other birth defects.

It seemed to me that our doctor purposely painted the picture as dark as possible, offering little hope or optimism for a baby born with cleft palate. He never once told us that, in the majority of cases, cleft lip/palate is an isolated defect and not part of a larger and more devastating syndrome. He never once offered any resources for support or help. He had no idea of the wealth of information and support that was available from the Cleft Palate Foundation and similar organizations.

Needless to say, that was my last appointment with this doctor. I continue to be thankful every day that I called the Cleftline as soon as I learned of Timmy’s birth defect. The people at the CPF were ready with accurate and current medical information. The staff was supportive and encouraging in affirming our positive outlook for babies born with cleft. The information and support offered was realistic, but promising, hopeful and most importantly, correct.

Timmy, three years old

Timmy was born six months later. None of the dire predictions came true. He was otherwise normal and healthy, just as all of the prenatal tests had suggested. He fed normally from the start with a cleft lip/palate bottle. Our daughters had no problem with their little brother. We had prepared them by showing them a few “before and after” photographs of babies born with a bilateral cleft lip. We simply explained that his lip hadn’t formed quite right while he was inside my tummy and the doctors would fix it as soon as he was old enough. Both were so undisturbed by his appearance that they each took him to school for show and tell when he was only a few weeks old.

No one turned away in horror when they saw Timmy. Actually, I was amazed by the number of people who were familiar with cleft lip and didn’t hesitate to offer encouragement. In the eleven weeks before Timmy’s lip was repaired, I can remember several different occasions, at the shopping mall or grocery store, where total strangers recounted the stories of their cousin’s neighbor, or best friend, or co-worker whose baby was born with a cleft. All of the stories ended with the happy news that the baby (now 15 or 21 or 30) was just fine.

Three and one-half years ago, when I questioned my doctor as to why he would recommend terminating a pregnancy for a correctable problem, he told me that people want perfect children and that my child would not be perfect. Having then had the benefit of nearly 7 years of motherhood, I reminded him that no child is perfect at birth or otherwise. I felt then, as I do now, that some defects are visible at birth and others merely remain hidden, showing themselves at some point throughout our lives. Not one of us is born perfect nor do we ever attain perfection in our lives. That is called being human.

Last Updated: Jul 24, 2006