Forgotten Diseases Research Foundation

United States of America

Postnatal Growth

CDC Growth Charts

The US CDC created a set of growth charts in the year 2000. The charts depict weight, length or stature, head circumference, and BMI from birth to age 20 (head circumference goes only to age 3). The CDC also published background information about the charts (1).

An important point about the charts is that the head circumference data in neonates is based on a small sample set from the Fels Longitudinal study (188 boys and 174 girls). This data was collected between 1960 and 1994 in a small region of Ohio and may not be representative of infants today. Additionally, there is no data for infants up to 2 month and the sample for 2 to 3 months had only 38 boys and 33 girls. Other samples in infants aged less than 6 months had fewer than 100 subjects (see page 130 of the CDC's background information document).

We have included newer head circumference curves based on larger sample sets on this page.

Weight

Length/Height

Head Circumference

The curves below use data from a large study of ~75,000 infants and children attending checkups at facilities in 33 mid-Atlantic US states (2). The data obtained in this study differed substantially from the CDC 2000 data; two curves below compare that data with the CDC data, as the comparisons curves in the orignal paper did not appear to accurarately reflect the differences between the two sets of data.


BMI and Weight for Height

Size at Birth by Gestational Age

All Races/Ethnic Groups

A 2003 study obtained data for all births in the United States in the years 1999 and 2000 (7.6 million births; 3). Data was obtained from the Natality Data Sets from the National Center for Health Statistics. The authors narrowed the data to include only singleton births when the date of the last menstrual period was known, and for which weight was consistent with gestational age. This process resulted in 6.7 million births. The study authors created a data table with percentile values from 1-99; you may download it here. The table also has values for firstborn, nextborn, black, and white children, but they mix the sexes.

Weight

Weight, Length, and Head Circumference

The curves in this section were derved from a study of ~260,000 singleton infants born in 248 hospitals in 33 states between 1998 and 2006 (4). The authors excluded infants with congenital anomalies and other conditions with negative effects on intrauterine growth. Extreme outliers were also excluded.

Individual Races/Ethnic Groups

Data for the 8 curves for Individual Races/Ethnic Groups came from a large study performed on children born between 1994 and 1996 (5). The authors obtained records from the National Center for Health Statistics. They obtained ~9.9 million records for singletons born to US resident mothers. They used records in which gestational age was known and not imputed, clinical estimates of gestational age were not used, and weight had been recorded. Inconsistent birthweights were excluded, meaning that some, but not all, children with congential conditions were excluded. After exclusions, the study used records for 4.94 million male and 4.70 million female infants. The study did not examine Asian-American birthweights, as another study had done so already.

Weight

Barth Syndrome

Barth syndrome is an X-linked condition that usually affects boys and men. Health problems associated with it include diseased heart muscle with an enlarged heart (cardiomyopathy), reduced white blood cells called neutrophils (neutropenia), muscle muscle weakness, an underdeveloped skeleton and growth abnormalities. You may read detailed information about Barth syndrome on the Barth Syndrome Foundation website.

A longitudinal study published in 2012 obtained data from 73 patients in the Barth Syndrome Registry (6). Patients were located in the US, the UK, and elsewhere. Thus, the study is an international one. We are listing here because most of the study authors were in the United States. The authors created curves for weight and height. There are curves from 0-36 months and 2-20 years. They are superimposed on the CDC growth curves for the males.

Clicking on the link below will take you to a them on the journal publisher's website. The red lines show the CDC curves, and the black lines show growth in Barth syndrome. Boys with Barth syndrome tend to be smaller until they are older teenagers and weigh less overall. Some developmental delays were also reported as being very common (more tha half of study subjects). They included speech delays and delays in sitting up and walking, as well as the need for special education services.

Length, Stature, and Weight in Boys with Barth Syndrome


Cornelia de Lange Syndrome

Cornelia de Lange syndrome (CdL syndrome also known as Brachmann-de Lange syndrome; 7) is a very rare disorder that causes intellectual disabilities, delays in motor and speech development, and other problems, including congenital absence of parts of the upper limbs. Patients have distinctive facial appearance, which can help with diagnosis. A 1993 study measured growth in 277 children with CdL syndrome. Data was obtained from birth to age 22 years. The paper is freely available on the publisher's site. Figures 1-10 are curves of head circumference, weight, and height in girls and boys.

Costello Syndrome

Costello syndrome (CS) is a very rare disorder that causes a number of medical and other problems. Many children with CS are born with heart problems, for example. They also tend to have feeding difficulties and failure to thrive, as well as developmental delays and intellectual disabilities. They may develop tumors. Curly hair, distinctive facial features, and an outgoing personality are also common. An excellent summary of diagnostic guidelines for Costello syndrome (including photographs) is available from Costello Kids. If you suspect that your child has Costello syndrome, check with your family physician about testing. If your child's doctor isn't familiar with Costello syndrome, the information from Costello Kids may help.

Growth Curves

A study published in 2012 obtained growth data on 94 individuals with CS (8). The authors obtained ~1,400 individual measurements of height, weight, and head circumference from birth to age 10. Due to the limited number of study subjects, they created curves for boys and girls combined. The weight and height curves go to age 10. The head circumference curves go to age 3. Head circumference data was limited after age 3, and creating curves was not possible. The curves are available at the publisher's website.


Down Syndrome

The CDC has growth curves for individuals with Down syndrome (DS). The study that led to the creation of these charts was performed in the Philadelphia area between early 2010 and mid-2013. It enrolled 637 patients and obtained a total of 1,520 measurements (9). Another study examined body mass in children with DS. The authors stated that the DS children at the 85th percentile on the CDC's BMI charts for typically developing children is a better measure of excess body fat than the DS-specific BMI charts (10).

Majewski Osteodysplastic Primordial Dwarfism Type II (MOPD II)

MOPD II is a member of a group of dwarfism disorders. Intrauterine growth retardation, extremely poor growth, and microcephaly are common in these patients. The Walking with Giants Foundation has detailed information about the different types of primordial dwarfism. We have also defined a few terms here:

  • Osteodysplastic means that patients have abnormal bone development.
  • Primordial means that the disease's effects are present at the very earliest stages of development.
  • Microcephaly means a very small head. This condition often accompanies poor brain growth.

Growth Curves

A study published in 2012 created growth curves for length, weight, and head circumference (11). The authors obtained growth data from the medical files of 26 with MOPD II that had been confirmed laboratory studies; 12 patients were male and 14 were female. Overall, the authors found that the average height in adults with MOPD II was ~100 cm (~39 inches). Weight and head circumference were also extremely low. Additionally, eleven patients had been treated with growth hormones, thereby raising the average. Due to the very small number of subject, the growth curves combine data for boys and girls.

Growth Charts for Majewski Osteodysplastic Primordial Dwarfism Type II

Morquio A Disease

The charts in this section come from an international study of growth in children with Morquio A disease (12). The subjects were from 43 countries as follows:

  • There were 354 children; 3,279 measurements were made
  • 248 patients were Caucasian
  • 60 were Hispanic
  • 39 were Asian
  • 4 were Black
  • The remainder were of other backgrounds

The study was performed in the United States, which is why the information is on this page. Clicking a link below will cause the chart to download from the Little People of America website.

Weight

Length/Height

BMI

Neurofibromatosis, Type 1 (NF-1), US Caucasians

Neurofibromatosis (or NF) is actually one name for a number of different disorders. The most common form is called NF1. Roughly 90% of NF cases belong in the NF 1 group. NF1 occurs once in roughly 2,500 to 4,000 births. Two other forms of NF are called NF2 and Schwannomatosis. Other rarer forms of NF exist (NF3, NF4, NF5 and NFNS). These forms are much rarer than NF1, and happen once in every 40,000 births.

Overall, NF involves the growth of tumors called neurofibromas. Neurofibroma means that the tumors grow along nerves ("neuro) and are made of fibrous connective tissue (fibroma). These tumors can become malignant (that is, cancerous). They can also make bumps under the skin, cause problems in the skeleton (scoliosis is an example), and put pressure on nerve roots. Children with NF1 may go through puberty early. In the United States, people with NF may wish to contact the Neurofibromatosis Network, which also has information about the different kinds of NF.

A cross-sectional study published in 2000 obtained data from the records of NF1 patients who had been seen in 14 clinics throughout the United States (13). There were 183 males and 202 females in the analysis of height (stature) and 436 patients in the analysis of head circumference (216 males and 220 females; 13). All the patients were Caucasian. Overall, NF1 patients were shorter than typically growing children, and their head circumferences were larger. Centile curves were generated for each sex, aged 2-18 years. Clicking on the links below will cause curves to download from the journal publisher's website. You can choose to link to a web page with a jpg image or you can download PowerPoint slides with the curves. The full paper is also freely available via the link in the references section of this page.

Height and Head Circumference

Noonan Syndrome

Noonan syndrome (NS) is a rare condition that causes heart and other problems. The most common heart problem in NS a condition called pulmonary valve stenosis. This term means that blood flow out of one of the chambers of the heart is obstructed, a problem that reduces blood flow to the lungs. Patients also have similar-looking faces. Noonan-like facial characteristics change as patients get older. Our web page has more information on facial and other characteristics of NS. Short stature is common in Noonan syndrome, but size at birth is often normal. Growth hormones can help in this regard. Many or most Noonan syndrome patients have learning disabilities, but some do not. For example, a study published in 2007 found that 17 out of 48 patients had average or higher intelligence, with 8 patients in the high average range and 1 in the superior range (15). Patients may also bruise or bleed easily, and, in newborn boys, the testicles in boys may not be descended. There are a number of support groups for Noonan syndrome for patients and their families; see the links on the top right and on our web page.

Disease Management

An organization called Dyscerne has created a free detailed booklet about the clinical management of Noonan syndrome. The booklet has photographs and copies of the growth curves below. Doctors or other health professionals may be interested in this review article in the journal Pediatrics.

Growth Curves

The curves here were prepared by Novo Nordisk in 2007 (Novo Nordisk makes growth hormones for clinical use). The charts use data from two studies of Noonan syndrome patients. A total of 256 people were enrolled in the two studies. The first one was performed in Germany (14); the second was done in the United States (16). Thus, the charts can be considered as international. We have put them on this page because they were made in the United States by Novo Nordisk (Novo Nordisk and other companies make growth hormones that can increase height in children with NS).

The shaded areas on the charts show expected growth in the general population.

Weight and Length/Height

Prader-Willi Syndrome

Prader-Willi syndrome (PWS) is a condition that causes floppiness (hypotonia) and feeding problems in infants. As children get slightly older, feeding difficulties disappear and they begin to develop insatiable appetites. Patients do not feel full, even after eating a large meal, and will continue to complain of hunger and/or steal food. Other problems associated with PWS include intellectual disabilities, delayed development of motor skills, and temper tantrums (especially where food is concerned). See our web page for more information (link at beginning of paragraph).

A 2012 longitudinal study obtained 758 measurements in 186 children with PWS. The childrenwere aged 0 to 36 months; none had been treated with growth hormones (17). Data was obtained from birth to age 22 years. The paper is freely available on the publisher's site; it contains a set of large-format curves of weight, length, head circumference, and BMI in girls and boys from birth to age 3 years.

Smith-Lemli-Opitz Syndrome

SLO is a developmental disorder that affects much of the body. Patients tend to have intellectual disabilites, small heads/microcephaly, and behavior problems. They may be autistic. Other medical problems that occur in SLO include heart, lung, and kidney abnormalities and small size. They may have extra fingers or toes or fused fingers and toes.

A 2011 longitudinal study obtained 1,854 measurements in 78 American and Canadian children with SLO. The children were aged 0 to 18 years (18). Clicking on the links below will cause curves to download from the journal publisher's website. Note that the charts mix boys and girls together. There are no separate charts for each sex. This is because the study authors discovered the height, weight, and BMI for boys and girls with SLO were not significantly different. Average-sized children with Smith-Lemli-Opitz syndrome are at roughly the 2nd percentile on the CDC curves.

Weight
Height
BMI

References

  1. 1. Department of Health and Human Services (2002) 2000 CDC growth charts for the United States: methods and development. Vital and Health Statistics 11(246). Full text from CDC.
  2. 2. Daymont C et al. (2010) Head circumference distribution in a large primary care network differs from CDC and WHO curves. Pediatrics 126(4): e836-842. Abstract on PubMed.
  3. 3. Oken E et al. (2003) A nearly continuous measure of birth weight for gestational national reference. BMC Pediatrics 3:6   doi: 10.1186/1471-2431-3-6. Full text on PubMed.
  4. 4. Olsen IE et al. (2010) New intrauterine growth curves based on United States data. Pediatrics 125(2):e214-224. Abstract on PubMed.
  5. 5. Alexander GR et al. (1999) 1994-1996 U.S. Singleton birth weight percentiles for gestational age by race, hispanic origin, and gender. Matern Child Health J 3(4):225-231. Abstract on PubMed.
  6. 6. Roberts AE et al. (2012) The Barth Syndrome Registry: distinguishing disease characteristics and growth data from a longitudinal study. Am J Med Genet 158A(11):2726-2732. Full text from publisher.
  7. 7. Kline AD et al. (1993) Growth manifestations in the Brachmann-de Lange syndrome. Am J Med Genet 47(7):1042-1049. Abstract on PubMed.
  8. 8. Sammon MS et al. (2012) Normative growth charts for individuals with Costello syndrome. Am J Med Genet A 158A(11):2692-2699. Full text from publisher.
  9. 9. Zemel BS et al. (2015) Growth Charts for Children With Down Syndrome in the United States. Pediatrics 136(5):e1204-1211. Full text from publisher.
  10. 10. Hatch-Stein JA et al. (2016) Body composition and BMI growth charts in children With Down syndrome. Pediatrics 138(4):1e20160541. doi: 10.1542/peds.2016-0541. Abstract on PubMed.
  11. 11. Bober MB et al. (2012) Growth in individuals with Majewski osteodysplastic primordial dwarfism Type II caused by pericentrin mutations. Am J Med Genet A 158A(11):2719-2725. Full text from publisher.
  12. 12. Montaño AM et al. (2008) Growth charts for patients affected with Morquio A disease. Am J Med Genet A 146A(10):1286-1295. Full text from publisher.
  13. 13. Szudek J et al (2000) Growth in North American white children with neurofibromatosis 1 (NF1). J Med Genet 37(12):933-938. Full text on PubMed.
  14. 14. Ranke MB et al. (1988) Noonan syndrome: growth and clinical manifestations in 144 cases. Eur J Pediatr 148(3):220-227. Abstract on PubMed.
  15. 15. Lee DA et al. (2005) Psychological profile of children with Noonan syndrome. Dev Med Clin Neurol 47(1):35-38. Abstract on PubMed.
  16. 16. Witt DR et al. (1986) Growth curves for height in Noonan syndrome. Clin Genet 30(3):150-153. Abstract on PubMed.
  17. 17. Butler MG et al. (2011) Growth standards of infants with Prader-Willi syndrome. Pediatrics 127(4):687-695. Full text on PubMed.
  18. 18. Lee RWY et al. (2012) Growth charts for individuals with Smith-Lemli-Opitz syndrome. Am J Med Genet A 158A(11):2707-2713. Full text on PubMed.

 

Page last modified on 17 March 2017.