Table 4.

Caregiver report of communication about the child’s diagnosis at birth (n = 42)

	n	%
First communication about diagnosis*
Pediatrician	19	46
Delivery physician	11	27
Delivery nurse	7	17
Otolaryngologist	6	15
Plastic surgeon	6	15
Adoption agency	3	7
Nurse caring for child in days after birth	2	5
Audiologist	2	5
Other	3	7
Initial response to diagnosis*
Concern/anxiety	33	79
Surprise/shock	27	64
Sadness	27	64
Guilt	23	55
Confusion	13	31
Frustration	10	24
Indifference	1	2
Happiness	1	2
Love	1	2
Didn't understand question	1	2
N/A because of adoption	1	2
Theme/Sample Response
Specific diagnosis was given	14	38
“he had microtia with atresia and possible Goldenhar syndrome” (male, age 4)
Delayed or inaccurate initial diagnosis given	10	27
“thought possible Treacher Collins because of absence of ears, but it was ruled out a few days later” (female, age 7)
Little or no information provided	9	24
“I was really left in the dark about it” (male, age 1)
Expectations about the diagnosis	9	24
“these conditions can be related to spinal, kidney, and heart abnormalities” (male, age 5)
Referrals to specialists discussed	8	22
“he would be referred to the local children’s hospital ENT and audiologist” (male, age 13)
Physical description	8	22
“was told jaw and ear were undersized, underdeveloped” (female, age 2)
Need for medical testing	7	19
“would need further testing on other body parts” (female, age 3)
Parents seeking information themselves online and from providers	4	11
“I had to find the name of the diagnosis myself online” (male, age 5)
Unsure/do not recall	4	11
“can’t remember” (male, age 12)
Reassurance given	1	3
“that it was probably not a big deal, he was healthy” (male, age 13)
Recall negative emotional experience	1	3
“it was very scary and emotional birth experience” (male, age 1)

^*Questions allowed for selecting more than one answer, numbers do not add to total sample number