Table 8 Exemplary quotes illustrating the impacts of having an infant/young child with achondroplasia on parents

Caretaking responsibilities

 Manage child’s medical care (e.g., arrange/go to appointments)

We have a doctor appointment for him at least every other week, if not every week…there's just a lot more to do…with him being on oxygen, it's a lot harder to go anywhere. There's just so much more to carry with him. (204; parent of 6-month-old)

 Monitor child to avoid complications of achondroplasia

…right now, she still doesn't have a 100% head control. So, when the other kids are going down the slide at the park, I don't let her do that by herself…I think she'd fall back because of her head. (248; parent of 22-month-old)

 Educate others about achondroplasia/advocate for child

A lot of people just note her size, or they’ll say she’s too young to be doing the things that she’s doing like walking or talking or playing. Not too many people are rude. You can just tell they’re very confused. I just tell them she has dwarfism, achondroplasia, and then they start asking questions… I answer it just to the best of my ability… (211; parent of 21-month-old)

 Find achondroplasia appropriate items (e.g., buying or adapting clothing, toys, car seat)

Having special strollers and planning. Most of his stuff we have, it's not custom or anything like that, but having to pick baby gear really specifically to make sure it's safe for his back… (246; parent of 12-month-old)

 Find  childcare/babysitting that meets child's needs

We went to one [early childcare center] first and it didn't go along with what we want in terms of achondroplasia. They didn't [listen to] us about the recommendations they need to follow, they were not that responsive, and at the end we found the other [childcare] center. From the beginning, they were very responsive… (433; parent of 20-month-old)

 Do extra care for child because of achondroplasia (e.g., carrying, feeding)

Well, he can’t dress himself yet…we’re working on [son] feeding himself, because he can’t… with his arms being so short, it’s kind of hard for him…we’re working on getting a spoon from whatever it is he’s eating to his mouth. (224; parent (with achondroplasia) of 19-month-old)

Emotional well-being

 Feel stressed/overwhelmed

I'm super stressed out with all the appointments and going back and forth and seeing different people and making sure that I'm trying to find him the best providers that have experience with achondroplasia. (203; parent of 3-month-old)

 Feel depressed/sad

Sometimes, it affects me, in the sense that it makes me feel sad people seeing your son as different. If they knew him, they would realize he is a normal child, he has no problems, it is only at a physical level… It hurts me when people say things about my child, but what can I do? … (434; parent of 22-month-old)

 Feel anxious/nervous

I feel a bit anxious about [son] leaving the comfort zone [of family and friends] and going to nursery school or primary school. I know he will adapt whatever the circumstances – he will live with his condition his entire life, but I’m a bit nervous about the social situation anyway… (413; parent of 9-month-old)

Worries and concerns

 Child’s physical health

I feel that it's been—it’s made me very paranoid. I find myself overanalyzing every little thing. If he cries too much then, I'm afraid maybe he's got more fluid on his brain, or there's something going on that I don't know… (203; parent of 3-month-old)

 Child’s emotional health

…I worry about her future and how she'll be treated as a teenager and the adolescent years when it's noticeable, and she is aware of how different she is. I do worry about how that will affect her mentally… (248; parent of 22-month-old)

 Relationships with other children

I’m worried that he won’t be accepted like everyone else, or that other kids will reject him because he’s different…I’m worried about what he will feel due to the reactions of other kids or parents. You know children can be brutal…They might pick on him more often. (413; parent of 9-month-old)

 Child’s ability to function independently

I'm definitely worried about the future all the time and accessibility for him, that's a huge concern. Him being able to be independent is a big worry. Wiping, your own personal hygiene. (246; parent of 12-month-old)

 Child’s future

What worries me is that when he is an adolescent, an adult, he is going to have complications…always going to the doctor…when he starts school, we might have to fight for infrastructure for going to the bathroom and all that, he is going to suffer…for something that he did not choose… (431; parent of 15-month-old)

Daily well-being

 Miss or limit social activities

Interviewer: …what about you socially? Are you able to have time to do activities with friends?

Parent: Honestly, the first response there was what friends? …I do have a monthly mom group that I go to once a month. So, that's pretty much it. (204; parent of 6-month-old)

 Experience strain in family

He really hates the oxygen…It used to disrupt his sleep, but I think that's started to resolve a little bit. Yes. It's been really stressful for our family for him to have to wear it every night… (246; parent of 12-month-old)

 Missed work time

Right now, I miss work constantly, but there's a flexibility to make up for the time. If I have to attend any session or appointment, I do it. (433; parent of 20-month-old)

 Increased family closeness

I would actually say that it has made family relationship[s] better just between me and the family members. I mean, now, most [of] my family members absolutely love him, aren't afraid of him…I would say a lot of my family kind of overcompensate because of achondroplasia… (204; parent of 6-month-old)

 Friendships/social connections through dwarfism community

I'm on four or five different [social media] groups. The Little People of America’s page, the parents of little people page…It's a very, very good support resource, and I've made at least 10 or 15 new friends, at least, online, that I can go to with questions… (204; parent of 6-month-old)