What Is Achondroplasia? Resources + Tools
What Is Achondroplasia? Resources + Tools

Daily Life With Achondroplasia

BIRTH TO 2 YEARS

Daily Life With Achondroplasia

BIRTH TO 2 YEARS

Home Adaptations

Equipment

Children with achondroplasia often require adaptations at home and in daycare to help keep them safe and encourage independence. Common adaptations during infancy and toddlerhood include:

  • A high-chair, infant seat, or stroller with a hard back
  • A neck roll when in a stroller or car seat
  • Firm pillows or a feeder seat to support their back during feeding

The skeletal dysplasia community is very creative and resourceful when it comes to modifications to promote independence. There are many tips, tricks, and devices to help people of short stature. You and your child might even create a new adaptation to share with others!

Click for more information on adaptations:

Clothing

Clothing a child with achondroplasia requires extra planning, but it’s worth the effort to make sure your child is comfortable. During infancy, you may not need to modify the length of the sleeves and pants on your child’s clothes. As they get older, their clothing will likely need to be tailored. If you don’t know how to sew and are interested in learning, there are many resources available to help you learn, such as local craft stores, friends or family members, or online tutorials. More adaptive clothing ideas can be found here.

Select footies or rompers that zip-up or button-down to accommodate a larger head

Choose light, breathable fabrics to help with night sweats

Participate in a clothing swap hosted by an advocacy group

If your child is on oxygen therapy, choose outfits that are footless and/or have an opening in the front to allow the tubing to come through the outfit

Feeding Challenges

Overcoming feeding challenges

Infants with achondroplasia must have their head and neck supported during their first year of life. During feeding, your baby should be positioned with a straight back and with their head and neck in alignment. It may be helpful to support their head and neck with firm pillows or put them in a feeder seat. If they are using a high-chair, it should have a flat, supportive back.

Children with achondroplasia may take longer to start feeding themselves than their peers without achondroplasia. They often have weak muscles in the face and mouth, which affects their ability to suck, chew, and swallow. They may also have swallowing difficulties due to blockage of the upper airway. Additionally, their chewing ability may be affected by the delayed eruption of teeth. These problems often get better on their own over time.

Difficulty feeding, a poor suck, poor weight gain (on the achondroplasia-specific chart), and weakness could be signs of a neurological problem in rare cases. If you see these problems in your child, ask their pediatrician if they need to be evaluated by a pediatric neurosurgeon.

Advocating for your child

As a parent of a child with achondroplasia, you have an important job: advocating for your child

Most children with achondroplasia grow up to be thriving adults, but they will need extra help from you in their early years. The best way to set your child up for success is by taking a hands-on approach in key areas of their life, such as in their medical care, at daycare, and at home. Remember, your child depends on you to advocate for them until they find their voice.

The first step to becoming an advocate for your child is learning as much as you can about achondroplasia and being prepared to educate others. The resources provided on this site were developed with the goal of helping you on this journey.

Advocacy in medical care

Advocating for your child in the medical setting includes making sure your child is getting care from the right providers at the right time.

Your child’s pediatrician may not have experience treating patients with achondroplasia. The following print-out may help you in talking to your child’s providers:

Medical checklist: Birth to 5 yearsDownload PDF

Additionally, your child’s pediatrician may be interested in the following resources:

You know your child better than anyone. If you have a concern that your child’s health care provider is not addressing, you may consider getting a second opinion.

Advocacy in daycare

You may be wondering if your child will be able to attend a typical daycare. The answer is usually “yes,” if the staff and administration are willing and able to provide the support that your child needs to achieve independence. As the parent, it is your job to ensure that their needs are met. Advocating for your child in the daycare setting often begins by having a conversation with their caretaker. In this conversation, you might:

Keep in mind that your child’s needs will change over time. You and your childcare providers need to work together and have frequent conversations about how to help your child.

Next section: Early Childhood

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HEAR FROM THE COMMUNITY

“My joy is seeing my child’s daily progress. There were many things she couldn’t do like other children. She is gradually becoming capable of those things, little by little. I realized that it’s okay to grow slowly.”

- Mother of a child living with achondroplasia

“My friends would describe me as someone with a big personality, very outgoing, and someone that always is smiling. I’m a people person, and I love making people happy.”

- Young adult living with achondroplasia

“We were always outside, we always were being competitive, playing sports, just being kids.”

- Young adult living with achondroplasia

“What I want to convey to society is that rare conditions exist, and there are many people in the world who need help. I genuinely wish that the world would be kinder. I hope people have a level of knowledge that allows them to understand the condition when they see a child that is smaller or looks different.”

- Mother of a child living with achondroplasia

“I see in my future pretty much what anyone else would: graduating school, graduating college, going on to a job I like, starting a family.”

- Teenager living with achondroplasia

“I would tell myself back then [at time of diagnosis], just take a deep breath and let go of the fear a little bit. Fear is normal. Once you are over that fear, you kind of just dive in. You dive into the information, and you educate yourself and learn everything you can learn about achondroplasia and really try to be your kid’s biggest advocate.”

- Mother of a teenager living with achondroplasia

“I was four years old when my younger brother was born. I was young and didn’t understand what achondroplasia was. I don’t care if my brother is tall or short. I was simply happy to have a younger brother.”

- Sibling of a person living with achondroplasia

“Really, we are just like everyone else. We may look different, but we like being treated like everyone else.”

- Teenager living with achondroplasia

“Having achondroplasia, you are going to come across challenges consistently. The way you are going to deal with them is really going to impact your life. Yes, I have challenges; obstacles get thrown at me all the time, but it’s the way of going about it and realizing there is so much more to life than having achondroplasia.”

- Young adult living with achondroplasia

“Typically, with achondroplasia, people focus on height, but there are other important aspects of the condition that impact quality of life.”

- Father of a teenager living with achondroplasia

“Our daughter is a person. She has feelings. Yes, she may be physically different than other children or other people, but I think that it is important to be aware of those differences without necessarily calling attention to them.”

- Father of a teenager living with achondroplasia

“We have relied heavily on the community. We are quite appreciative of the community and the resources that are available to help parents, siblings and individuals with achondroplasia. The diversity within this community has been quite enriching on many levels.”

- Father of a teenager living with achondroplasia

“The greatest joy as a parent is seeing my son be energetic and cheerful. I hope that my son will continue to look forward proudly, hold his head high, and live confidently and cheerfully.”

- Mother of a child living with achondroplasia

“What we have seen is that she has done a great job of adapting herself, getting creative, doing things a little bit differently, but she always finds a way to be successful.”

- Father of a teenager living with achondroplasia