The Home School Court Report
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November / December 2005

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Caring for a child with Down syndrome

One of the great joys of practicing family medicine is the double privilege of bringing a new life into the world, and then following this unique creation through the various stages of his or her growth and development. If the child has Down syndrome, the family doctor can be assured that many unique challenges and blessings lie ahead. I had only been in practice for a short while before I delivered my first child with this genetic condition. Now nearing adulthood, he has been gifted by God with great faith, and an unusual ability to lovingly relate to people in a way that cuts through pretension and platitudes to the heart of a matter.

Down syndrome is named after the physician who described the constellation of findings associated with this condition. In the general population, the incidence of Down syndrome is between 1:800 and 1:1000, and most primary care physicians have at least one such individual in their practice. This article will briefly outline the important medical considerations associated with raising a child with Down syndrome.

Diagnosing Down syndrome is not always as simple as one might think. If it is suspected, a special laboratory study to evaluate the infant's chromosomes-a "karyotype"-is critical to establish a definitive diagnosis.

Several potentially life-threatening conditions are common to the Down syndrome patient; if these are treated early, the child's potential long-term prognosis tremendously improves. As an example, congenital heart defects afflict almost half of all children with Down syndrome, and surgical correction is often essential for life. Once it is established that a child has Down's, an echocardiogram and electrocardiogram should be performed to screen for potential heart defects.

At the hospital where I practice, all newborns are now screened for hearing deficiencies. While the necessity of hearing screening may be debated for the general population, it is a must for infants with documented Down syndrome. Such screening should be performed by 6 months of age, if not sooner.

Because of a variety of concerns for Down's patients (including but not limited to the increased incidence of obesity, ear infections, sinus infections, and dental caries), breast-feeding is by far the preferred method of feeding. Unfortunately, this may be a frustrating experience during the first few weeks of life. A child with Down syndrome often has a poor suck at the start, and must be helped along to make the breast-feeding work. Once feeding mechanics improve, a close watch on the growth scale is in order, with both height and weight plotted on a scale specific to children with Down's. As the diet is advanced to include solids, good nutrition is crucial, and a diet replete with high fiber and low-calorie foods should be provided.

Endocrine disorders such as an underactive thyroid are commonly found, and a thyroid-stimulating hormone (TSH) should be checked yearly to ensure this condition is adequately treated. In addition, because of the increased frequency of poor vision and tooth decay, a pediatric ophthalmologist and dentist should be involved for regular checkups as well.

Lastly, as children with Down syndrome become more physically active in our society, such as by participation in the Special Olympics program, an x-ray of the neck to screen for atlantoaxial instability may be indicated. In this condition, there is a developmental anomaly of the top two vertebrae, making the cervical spine unstable and the spinal cord more susceptible to injury. I routinely check this study in patients with Down's who are involved in sports or have particularly physically active lives.

Whereas at one time the life expectancy of an individual with Down syndrome was in the 20s, that average has increased to about 50 years of age. This is likely the result of improved surgical techniques to correct heart and bowel malformations, as well as attention to the health care issues addressed above.

For many with Down's, their lives can be rich and full. I firmly believe that education at home provides the optimal environment for any child to reach his or her fullest potential. For those of you who have chosen to tackle difficult but rewarding task of homeschooling a child with Down syndrome, you may not know until eternity the impact your efforts have had for the Kingdom of God. Unquestionably, God has used these individuals in mighty ways to impact the lives of those fortunate enough to be touched by them. I have been one so touched.

About the author

An HSLDA board member since 1997, Dr. Rodger Sayre is a family physician, and his wife Mary is a registered nurse. They live in Tunkhannock, Pennsylvania, and teach their 11 children at home. Dr. Sayre received his medical degree from Thomas Jefferson University in Philadelphia and maintains board certification in family practice. A Geisinger Medical Group associate with a busy practice in Nicholson, Pennsylvania, he is a member of the Christian Medical Association, the American Academy of Family Physicians, and the American College of Sports Medicine.