A story of premature birth and the NICU roller coaster

Phenylketonuria Or PKU

on December 10, 2012

Phenylketonuria (PKU) is a rare condition in which a baby is born without the ability to properly break down an amino acid called phenylalanine.(please follow the link below)

I recently found out that a woman’s grandson who is a week old was rushed to the local hospital. He was diagnosed with PKU. Somehow the pediatrician nor the hospital he was born at mentioned that this was picked up on the Newborn Screening as best I can tell. I’m not sure of the particulars but the hospital told the parents the baby has only a 10% chance of living. They were told there isn’t much they can do and that the baby will end up mildly to severely impaired or something to that end. I didn’t know what to say but since this baby is in the same hospital where my son died it has me on the edge of my seat. I am praying for a miracle and the best possible hospital staff for him. I worry about the baby’s parents. Mostly I pray this baby defies the odds. I looked this PKU diagnosis up and there is hope if the baby is kept on a strict diet. I don’t know what the plan is and I shouldn’t ask the babies grandmother, as its not my business and I’ve probably already imposed to much as is. I just feel like somehow I should do something. She politely and somewhat firmly suggested I just pray for them. I should take the hint. It’s hard to keep my mouth shut when I know what can go wrong at that hospital, but I’m going to think positive and stay optimistic ….which is the only advice I could give to her. I believe in miracles and I pray this baby is one.


3 responses to “Phenylketonuria Or PKU

  1. mmmarzipan says:

    So sorry for this family and also that their situation has brought up these feelings of helplessness and anxiety for you. My best wishes for this baby and hi family… and yours too!

    I have something that I need to share with you also about Saif’s fund that I think might make you happy :)! May I please have your email address so I can write to you about it?

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