AUTHOR: Heather Ariagno Iezza, M.D.

Growth and Nutrition

Growth and Growth Charts for Children with Special Health Care Needs

A child’s growth is influenced by many factors, including:

  • Genetics
  • Nutrition
  • Environment
  • Overall health

Factors that can cause a child to be underweight include:

  • Not eating enough food
  • Eating the right amount of food, but not absorbing the nutrients well enough
  • Burning calories at a faster rate than normal

Does your child have a condition that causes him to grow differently? Certain genetic or chromosomal abnormalities cause children to have a shorter height, smaller head, or increased or decreased weight compared to typically developing children. Some differences, such as being born prematurely, or with a low birth weight or a severe illness, may cause a child to start out small. But they may eventually catch up in growth.

Children with feeding problems may have a difficult time eating enough food by mouth for adequate growth. And some conditions, such as metabolic abnormalities or congenital heart disease, require a child to consume more calories than typical to grow adequately.

Growth Charts for Children with Special Health Care Needs

Does your child have a condition that makes it hard for her to stand on a scale or stand straight up to be measured? If so, it may be difficult to accurately measure weight and height. Your child’s health care team may need to use adaptations to get these measurements. For example, there are different types of scales that can be used for children who cannot stand. These include bed, wheelchair, or bucket scales. Or you may need to carry your child onto the scale and then subtract your weight.

It may difficult to measure the height of a child with scoliosis (an atypical lateral curve of the spine) or contractures (a usually permanent tightening of muscles, tendons, ligaments, or skin). Another option for assessing growth is to measure the arm span (fingertip to fingertip), upper arm length, or lower leg length, crown-rump length, or sitting height (measurement from the child’s bottom to the top of the head). It is important to do the measurements the same way each time. For example, always remove clothes, special shoes, or braces.

If a condition causes your child to grow differently then a typically developing child, it may be difficult to interpret growth using the standard growth charts. Special growth charts have been developed to predict and understand the growth of children with specific conditions such as:

  • Prematurity 
  • Down syndrome
  • Prader-Willi syndrome Williams syndrome
  • Cornelia deLange syndrome
  • Turner syndrome
  • Rubinstein-Taybi syndrome
  • Marfan syndrome
  • Achondroplasia

Unfortunately, there are many limitations to these special growth charts that affect their accuracy. The percentiles are often based on a small sample size of children with the condition. And the condition may have a variety of associated medical problems that would affect growth. Therefore, some professionals recommend using the standard growth charts for tracking the growth of a child with special health care needs.

If your child was born prematurely, adjust for gestational age when using the standard growth chart. For example, if your infant was born at 32 weeks gestation, the measurements need to be adjusted by eight weeks. When your infant is four months old, instead of plotting at the four-month age line, plot on the two-month age line. This way, your child is compared to infants who are their corrected age. Use this correction until your child is two years old.


MedCalc: Interactive Growth Charts:

2000 Website of the Center for Disease Control and Prevention with National Center for Health Statistics Clinical Growth Charts


Website of the U.S. Department of Health and Human Services, Maternal and Child Health Bureau including the CDC Growth Training Module: The CDC Growth Charts for Children with Special Health Care Needs

Special Condition Growth Charts:

Down Syndrome:

Cronk C, Crocker AC, Pueschel SM, et al. Growth charts for children with Down syndrome: 1 month to 18 years of age. Pediatrics 1988; 81(1): 102–110.

Prader Willi Syndrome:

Holm V. in Greenswag LR, Alexander RC. (1995) Management of Prader-Willi Syndrome, 2nd ed. New York: Springer-Verlag.

Williams Syndrome:

Morris CA, Demsey SA, Leonard CO, et al. Natural history of Williams syndrome: physical characteristics. J Pediat. 1988; 113(2):318-326.

Cornelia de Lange Syndrome:

Kline AD, Barr M, Jackson LG. Growth manifestations in the Brachmann-deLange syndrome. Am J Med Genet 1993; 47(7): 1042-1049.

Turner Syndrome:

Ranke MB, Pfluger H, Rosendahl W, et al. Turner syndrome: spontaneous growth in 150 cases and review of the literature. Eur J Pediatr 1983; 141(2):81-88.

Lyon AF, Preece MA, Grant DB. Growth curves for girls with Turner syndrome. Archives of Disease in Childhood 1985; 60(10):932-935.

Marfan Syndrome:

Pyeritz RE. In: Emery AH, Rimoirn DL, Eds. (1983) Principles and Practice of Medical Genetics. New York: Churchill Livingstone.

Pyeritz RE. in: Papadatas CJ, Bartsocas CS, Eds. in: Endocrine Genetics and Genetics of Growth. 1985. Alan R. Liss, Inc.


Horton WA, Rotter JI, Rimoin DL, et al. Standard growth curves for achondroplasia. J Pediatr 1978; 93(3):435-438.

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