Child's Birthday:    day     month   year

Child's Gender:    Male Female

Birth weight: kg                                 Birth length:  cm    

                      lb    oz                                   in

Symptoms present at birth of unusual nature:

(example: extra digits, high palate)

Child's specific chromosome karyotype:

example: 47, XY, +i(12)(p10)[2]/46, XY, [18]

Prior to visiting this site, have you had contact with any other child/caregiver with a diagnosis of PKS?

Yes                No

Did your doctor suspect something unusual about your child prior to birth?

Yes                No

     If yes, were you given a specific chromosome diagnosis?

              Yes                No

Did a doctor or other medical professional suspect something unusual about your child after birth?

Yes                 No

     If Yes:

     What were the factors that brought about the suspicion?

      Who was it?

      How were you given the diagnosis?           in person 

                                                                   over the phone

                                                                                 other

     If No:

     How old was your child when you suspected something unusual about your child?

     years      months

     Whom did you confront with your suspicions?

     How did they react?

What medical conditions has your child had since birth?

(example: joint contractures, delayed development)

What has been the most important aspect of having a diagnosis for your child?

What has been the most serious aspect of your child's condition during his/her life?

On a scale of 1 to 10, how much control do you feel you have over your child's condition?

(1, no control; 10, total control)

Have you ever seen a genetic counselor about your child's condition?

     Yes            No

     If Yes, how helpful was she/he? (1, not helpful; 10, very helpful)

If the genetic counselor was helpful, please describe what he/she did that was helpful:

In what ways could the counselor been more helpful?

Has your child begun an Early Intervention program?

     Yes               No

     If Yes, how was your child referred?  

What services does your child receive from the Early Intervention program?

How would you rate your experience with Early Intervention? 

(1, not good at all; 10, excellent)

Mother's age at child's birth: 

Father's age at child's birth:  

Does mother or father have a specific chromosome diagnosis?

     Yes                 No

If Yes, who and what is it?

What is mother's ethnic background?

What is father's ethnic background? 

Child's first name:                                            

(this is for recording keeping purposes only)