Down Syndrome Growth Charts for Children and Teens

Author: The Children's Hospital of Philadelphia
Published: 29 Oct 2015 - Updated: 30 Aug 2026
Publication Type: Informative

Table of Contents:
Synopsis - Definition - Overview - FAQs - Insights, Updates - Related Content

Synopsis

This research presents the first updated growth charts for American children with Down syndrome since 1988, based on data from 637 participants tracked through age 20. The study, published in Pediatrics and funded by the CDC, offers pediatricians specialized tools to monitor physical development patterns that differ significantly from typical growth trajectories. These evidence-based charts prove particularly valuable for parents and healthcare providers managing the health of children with Down syndrome, as growth measurements serve as reliable indicators of overall wellbeing and can help identify potential health concerns early. The research also introduces the first BMI charts specifically designed for this population, addressing the increased concern about weight management during adolescence.*

At a Glance

• 1 - Down syndrome results from an extra copy of chromosome 21 and occurs in about one in 700 US births. Children with the condition tend to grow more slowly and stay shorter than their peers.
• 2 - Researchers tracked 637 participants up to age 20 between 2010 and 2013. The Down Syndrome Growing Up Study was funded by a four-year, $1.2 million CDC grant to CHOP.
• 3 - Children under age three showed marked gains in weight compared with the 1988 charts. Taller stature appeared mainly in males aged two to 20 relative to the earlier data.
• 4 - Life expectancy for people with Down syndrome rose from 35 years in 1985 to 53 years in 2007. The new BMI charts help evaluate excess weight gain, a growing concern through the teenage years.

Topic Definition

Down Syndrome Growth Charts

Down syndrome growth charts are specialized reference tools that plot the height, weight, and body mass index of children and adolescents who have Down syndrome, allowing pediatricians to compare each patient against peers of the same age and sex who share the condition rather than against the general population. They matter because children with Down syndrome, a genetic disorder caused by an extra copy of chromosome 21, tend to grow more slowly and reach a shorter stature than typically developing children, so standard growth charts do not accurately capture their development. The most recent US charts, produced by the Children's Hospital of Philadelphia with funding from the CDC and published in 2015, drew on data from 637 participants followed to age 20 and marked the first update since 1988, along with the first body mass index charts created specifically for this group. Because steady growth is a dependable signal of a child's overall health, these charts give families and clinicians a reliable way to track development, flag possible concerns early, and guide conversations about nutrition and weight.

Overview

Pediatric researchers have developed the first set of growth charts for U.S. children with Down syndrome since 1988. These new charts provide an important tool for pediatricians to evaluate growth milestones for children and adolescents with this condition. With these new charts, pediatricians will be able to compare each patient's growth patterns with peers of the same age and sex who have Down syndrome.

"Growth is a good indicator of a child's health and well-being, so it's an essential part of the pediatric examination," said study leader Babette S. Zemel, Ph.D., director of the Nutrition and Growth Laboratory at The Children's Hospital of Philadelphia (CHOP). "Children with Down syndrome grow differently from other children, so it is important to have growth charts that reflect their unique growth pattern."

The study appeared online Oct. 26 in Pediatrics. The study project, the Down Syndrome Growing Up Study (DSGS), was funded by a four-year, $1.2 million grant to CHOP from the Centers for Disease Control and Prevention (CDC).

Down syndrome, a multisystem genetic disorder resulting from an extra copy of chromosome 21, occurs in about one in 700 U.S. births. Doctors and parents have long known that children with Down syndrome tend to grow more slowly and are shorter than most other children.

Thanks to medical advances and improved access to care, overall health and well-being has improved for these patients; for example, life expectancy has increased from 35 years in 1985 to 53 years in 2007. This study investigated whether growth patterns have also improved.

The researchers followed 637 participants, up to age 20, recruited from the Trisomy 21 Program at CHOP and from community locations and pediatric practices, mostly in the greater Philadelphia area, between Jan. 2010 and July 2013.

All the participants were in their usual state of health at the times of measurement and, on average, had three study visits at which measurements were taken. Children under age three showed marked improvements in weight gain compared to the 1988 U.S. growth charts for children with Down syndrome. Improvements in height, reflecting taller stature, occurred mainly in males aged two to 20, relative to the earlier charts. In general, the DSGS charts were consistent with charts from U.K. children with Down syndrome, published in 2002.

The DSGS team also created the first-ever body mass index (BMI) charts for children with Down syndrome. The researchers noted that the charts do not represent an ideal distribution of BMI, but only describe BMI distribution among their study participants. They added that further investigations should determine how to use the BMI charts to screen patients for excess body fat and associated health symptoms.

"These charts more accurately reflect the growth of contemporary children with Down syndrome living in the U.S.," said Zemel. She added, "It is clear that growth has improved for infants and toddlers with Down syndrome over the past few decades, and that males are taller. The new BMI charts will be helpful for evaluating excess weight gain, which is mainly a concern as children advance through the teenage years. Ongoing research at CHOP, led by Dr. Andrea Kelly, and at Children's National Health System, led by Dr. Sheela Magge, will help determine if there are health consequences of excess weight in teens with Down syndrome."

About the Research

• Funds from the CDC (grant DD000518) and the National Institutes of Health (grants RR024134 and TR000003) supported this research. In addition to her CHOP position, Zemel is on the faculty of the Perelman School of Medicine at the University of Pennsylvania.
• Zemel's co-authors were Mary Pipan, M.D., Virginia A. Stallings, M.D., Waynitra Hall, M.S., Kim Schadt, MSN, all from CHOP; and David S. Freedman, Ph.D., and Phoebe Thorpe, M.D., MPH, both of the CDC.
• "Growth Charts for Children with Down Syndrome in the U.S.," Pediatrics, published online Oct. 26, 2015.

Famous People Who Had or Have Down Syndrome

Frequently Asked Questions

NOTE: Researched FAQs by Disabled World (DW)

Why do children with Down syndrome need separate growth charts

Children with Down syndrome grow differently and tend to be shorter, so charts reflecting their unique pattern give more accurate comparisons than standard ones.

Who developed the updated Down syndrome growth charts

The charts were developed by The Children's Hospital of Philadelphia, led by Babette S. Zemel, and published in Pediatrics in 2015.

How many children were included in the study

The Down Syndrome Growing Up Study followed 637 participants up to age 20, recruited mostly from the greater Philadelphia area.

What was new about the 2015 charts

They were the first US update since 1988 and included the first ever body mass index charts designed specifically for children with Down syndrome.

How common is Down syndrome in the United States

Down syndrome occurs in about one in 700 US births and results from an extra copy of chromosome 21.

How can parents use these growth charts

Parents and pediatricians can use them to compare a child growth with same-age peers who have Down syndrome and spot concerns early.

Do the BMI charts show an ideal weight range

No, the BMI charts describe the distribution among study participants rather than an ideal, and further research is needed for screening use.

Has growth improved for children with Down syndrome

Yes, infants and toddlers showed better weight gain and males were taller compared with the earlier 1988 growth charts.

Insights, Analysis, and Developments

Editorial Note: The development of these specialized growth charts represents a significant step forward in personalized pediatric care, acknowledging that children with Down syndrome follow their own distinct developmental path rather than simply lagging behind standard measurements. As life expectancy for individuals with Down syndrome continues to rise - now reaching into the sixth decade - having accurate, population-specific health monitoring tools becomes increasingly critical. These charts don't just measure physical growth; they provide a foundation for conversations between families and healthcare providers about nutrition, activity levels, and overall health strategies tailored to each child's unique needs, ultimately supporting better long-term outcomes for a community that has too often been underserved by one-size-fits-all medical standards.*

Attribution/Source(s): This quality-reviewed publication was selected for publishing by the editors of Disabled World (DW) due to its relevance to the disability community. Originally authored by The Children's Hospital of Philadelphia and published on 29 Oct 2015, this content may have been edited for style, clarity, or brevity.

* Editorial additions by Ian C. Langtree.