Community Discussion Forum Parent support what was your first reaction to pku Reply To: what was your first reaction to pku

Avatar of Momofadyangel

When we got the phone call about Addie. The caller ID said Denver Children’s Hospital. I’m like they want money. We almost did not answer the phone, but something made my husband answer it. They asked for me. I was in shock,after they told me. Clinton had to take the phone away. My thoughts were Not, us we have one child with HUGE problems. We do not need another one. God is only suppose to one problem to a family. Then the punch to the stomach was harder when they said we were to come right away her levels were extremely high, higher then the geneist ever saw.and breastfeeding was a poor option to sick to.Our extended families still don’t realize how difficult it is. We have not began the hard stuff yet with Addie PKU.

Quick Poll
Which of the following best describes you?
Parent/caregiver of an infant with PKU
Parent/caregiver of a child with PKU
Teenager with PKU
Adult with PKU
Grandparent of a child with PKU
Know someone with PKU
Healthcare professional