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

First Days With Baby

First Days With Baby

Home Adaptations

Babies with achondroplasia need love and snuggles, just like any other baby. They also need some special care to keep them safe

Your child’s head and neck must be supported for the first year of life. This is because their neck muscles may not be strong enough to hold up their larger head. If their head is not supptestorted, it can flop forward, causing potentially serious breathing problems. In addition, keeping their back flat and supported can help avoid curving of the upper back that can lead to medical problems later in life.

Medical guidelines provide the following recommendations to keep your child as safe as possible:

  • Support the baby’s head and neck, always
  • Use a neck roll when in a stroller or car seat
  • Keep their back straight and supported, including during feeding
  • Use a high-chair, infant seat, and stroller with a solid back
  • Use a rear-facing car seat as long as possible
  • Avoid letting them sleep unattended in a car seat or any other upright seat
  • Avoid using baby slings, mechanical swings, or unsupported sitting devices (umbrella strollers or soft fabric seats)
  • Avoid using jumping devices or doorway bouncers

Remember to talk to your child’s care team about any questions you may have.

Quick guide for caring for an
infant with achondroplasiaDownload PDF

Symptoms to watch for

Most babies with achondroplasia will not experience serious medical problems, but the following symptoms can signal the need for medical evaluation:

If you notice any of these symptoms, call your child’s care team. They may suggest an evaluation by a pediatric neurosurgeon.

If your child is unresponsive and is not breathing or only gasping, call 911 and follow their instructions. For more information about how to perform CPR in children and infants, click here.

Next section: Infancy + Toddlerhood

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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

“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

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

- Young adult 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

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

- Teenager 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

“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

“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

“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

“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

“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

“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

“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