From going to school to playing with friends, children with achondroplasia can lead healthy, active lives. At the same time, because of the way their bones grow, physical complications can occur and progress over time. But if you know what to expect, you can help your child focus on the most important thing of all—just being a kid.
What are the possible complications?
You may notice some complications as early as infancy. Some will correct over time. You should watch out for them, but not all of them may need immediate care. Others may not go away on their own and may require medical intervention and, in some cases, even surgeries. It’s important to talk with your doctor to understand when medical care might be needed.
It’s important to know that while achondroplasia may cause physical challenges, your child’s cognitive development is likely not affected.
Here are some of the more common complications that people with achondroplasia may experience throughout their lives:
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Ear infections are common—affecting 68% of children —and frequent ear infections can sometimes lead to hearing loss.
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Dental issues, like misaligned teeth, a narrow palate, open bite, or underbite
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Kyphosis, a forward bending of the spine. Most infants will develop this complication, but it usually corrects itself as they grow.
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Elbow stiffness, which often limits their ability to fully straighten their arms
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Bowed legs, which can affect walking and running, and may need surgery to manage
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Sleep apnea, a disorder where breathing repeatedly stops and starts during sleep. Sleep apnea is common, affecting about half of all people with achondroplasia.
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Obesity is common
High blood pressure and heart disease -
Back and leg pain related to spinal stenosis
Infancy is an exciting time for new parents. It’s also an important time to watch for complications. In the first year of life, an infant with achondroplasia needs extra attention and closer medical supervision. In the early months of infancy, the healthcare team may monitor for neurologic and respiratory complications. Your child’s healthcare team should be watching for additional complications.
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It may take a bit longer, but developmental milestones will happen. Your child will likely achieve them in their own time. Remember, every child’s journey will be at a different pace.
Be sure to ask your doctor about any concerns you have about your child’s development. Remember: Achondroplasia does not affect your child’s cognitive development.
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Emotions. Peer pressure. The need to fit in. The teenage years are difficult for everyone. But for a teenager with achondroplasia, this time of life can be even harder. Feelings of depression, anxiety, and isolation are common, so support is critical during these years.
Remember, your child’s intelligence is likely not affected by achondroplasia, so it’s important that they are spoken to at the appropriate level for a teenager.
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As your child becomes an adult, they may outgrow some complications, while others may continue. And new complications may arise that they haven’t experienced before. Mobility and pain can continue to be challenging, affecting work, physical activity, and even daily household responsibilities.
Learning what to expect today can help your child be better prepared to handle these challenges tomorrow.
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Family Planning Considerations
FACING DAILY CHALLENGES
Day-to-day activities may be more challenging and require extra help. Daily challenges can include:
Getting around (mobility)
Reaching things
Bathing
Turning a doorknob
Driving
Toileting
—Caregiver of a child with achondroplasia
