What is Turner syndrome?
Turner syndrome is a genetic condition that only affects girls and women. It occurs when 1 of the 2 X chromosomes normally found in females is missing or incomplete.
How common is it?
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Turner syndrome is very common, occurring in about 1 out of 2,500 live births.
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Approximately 800 infants are diagnosed each year, and 60,000 girls and women in the United States are affected.
What are some characteristics of children with Turner syndrome?
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The most common characteristics of Turner syndrome include
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Short stature
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Arms that turn out slightly at the elbows
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Webbed neck
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Low hairline in the back of the head
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Puffy hands and feet, known as lymphedema
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Possible complications of Turner syndrome include
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Congenital heart disease, especially coarctation (narrowing) of the aorta.
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Gastroesophageal reflux (increased spitting), and difficulty growing and gaining weight.
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Thyroid problems.
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Kidney problems.
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Frequent ear infections.
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Normal intelligence, but often learning disabilities (eg, visual-spatial weakness; problems with copying designs, right/left directions, math).
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Younger children may have increased anxiety.
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Orthopedic problems including dislocated hips and scoliosis (curvature of the spine).
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Who is the treatment team?
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The treatment team for children with Turner syndrome includes the primary care provider in the medical home and pediatric specialists in genetics, endocrinology, orthopedics, and sometimes cardiology.
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Physical therapy may be necessary for children with orthopedic problems.
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Special education targeted at visual-spatial weaknesses and counseling for anxiety may be needed.
What adaptations may be needed?
Medications
There are no special medications needed for Turner syndrome, but the Care Plan may include medications or special exercises for these children if they have other conditions (eg, heart conditions).
Physical environment
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Avoid placing infants in backpack carriers, umbrella strollers, walkers, or jumpers because these can increase reflux.
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Many children will appear younger than their age because of their short stature. Be sure to take their age into account as you interact with them.
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Infants may need
reflux precautions, which are measures to keep them from spitting up or vomiting their food. These precautions can include things such as keeping the child upright after feedings, frequent burping, and sleeping with the head of the bed angled up. -
Many children are at risk for teasing because of their physical appearance. Work to foster self-confidence with the child, as well as understanding among her classmates.
What should be considered an emergency?
No special emergency planning is needed for girls with Turner syndrome unless the child has other related conditions.
What are some resources?
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Turner Syndrome Society of the United States, 800/365-9944,www.turnersyndrome.org
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Frías JL, Davenport ML, American Academy of Pediatrics Committee on Genetics, Section on Endocrinology. Health supervision for children with Turner syndrome.
Pediatrics. 2003;111:692–702
Source: Managing Chronic Health Needs in Child Care and Schools: A Quick Reference Guide.
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The information contained in this publication should not be used as a substitute for the medical care and advice of your pediatrician. There may be variations in treatment that your pediatrician may recommend based on individual facts and circumstances.