When our daughter Penny was an infant, one of the greatest sources of relief came when the pediatrician compared her growth to other children with Down syndrome rather than with typically developing children. He measured her length, her weight, and her head circumference and then offered me an assessment. If he had used only the typical developmental charts, Penny would have measured in the negative numbers. Growth charts offer a way for doctors and parents to anticipate medical concerns. As a mom, it gave me great comfort to know that she was smaller than typical kids, and yet flourishing within the expectations for a child with her genetic condition.
So when I heard that the Children's Hospital of Philadelphia (CHOP) was recruiting participants in order to update the growth charts for children with Down syndrome, I gladly signed up Penny to participate. We reported to CHOP clinics for multiple measurements over time, and just a few weeks ago researchers released the results of this multi-year study.
Because Down syndrome has been recognized by doctors since the 1800s, researchers have been able to gather information about children and adults with Down syndrome as a group for many years. This information has sometimes led to tragic conclusions—whether in the form of doctors who recommended institutionalization in the past or doctors who exert pressure for women to terminate pregnancies with a prenatal diagnosis of Down syndrome in the present day—but this information has also helped change the health and well-being of people with Down syndrome. The life expectancy of a child with Down syndrome, for instance, has risen from 35 years in 1982 to 53 years in 2007, due to both social and medical advances. Increased life expectancy and better overall health led doctors to wonder whether children with Down syndrome were also growing differently than they had in the past. They created new growth charts not only as a tool for pediatricians but also in order to study any changes in the growth rates of children with Down syndrome.
More than 600 children participated in the study, and the researchers have highlighted a few important findings. One, young children (younger than 3 years old) with Down syndrome showed "marked improvements in weight" compared with older charts. In the past, due to feeding difficulties and other health concerns, many young children with Down syndrome were malnourished or failed to thrive. These results suggest that parents and doctors have been able to overcome obstacles to good early nutrition for babies and toddlers with Down syndrome, which points to a healthier future for those children. The second finding researchers pointed to was that young men with Down syndrome are taller than they were in the past, although researchers don't know exactly why this is the case. Third, although the United States as a whole has seen a marked increase in childhood obesity over the past 20 years, these charts do not reflect a corresponding rise in the rate of obesity. Children with Down syndrome are more susceptible to obesity than children in the general population due to lower muscle tone and thyroid conditions, so these findings may reflect improved health among children with Down syndrome.
I was grateful for the old growth charts for children with Down syndrome, and I'm grateful for the researchers who did the work to put together these new charts. They will offer a way for parents and doctors to assess the health and well-being of kids with Down syndrome. Medical advances and greater social support have been helping children with Down syndrome flourish over the past few decades. These new charts tell a story parents and doctors need to hear: Children with Down syndrome are growing up, and they are growing up well.
Amy Julia Becker is the mom of three kids who love broccoli and hot dogs, and who ask for lollipops every day! Her guilty pleasures are Chardonnay and Diet Coke. She is also the author of Small Talk: Learning from My Children About What Matters Most and A Good and Perfect Gift: Faith, Expectations, and a Little Girl Named Penny. Visit her at amyjuliabecker.com.