Saturday, April 16, 2011


Upon first meeting with a specialist, we ask that their responses not be sugarcoated.  Maybe not our best idea since honesty is so brutal and definitive answers for our situation are hard to come by.  But our desperate search for reassurances persists despite doctors' non-commitment on the outcome.  Friends who have researched Trisomy 18 online tell us about babies living for different periods of time.  We understand this is a possibility and remain hopeful, but we are also in possession of a fuller range of information and professional opinions than a mere Google search can provide.

Here are some of our realities...

(1) 90% of babies with Trisomy 18 are stillborn.  Of those who survive to birth, 50% will die in the first 30 days.  Of those who live beyond that month, 90% will die in the first year.

(2) Even if the baby is in distress, our midwives and doctors are unwilling to perform an emergency ceasarean section.  Because I've never had a caesarean previously and the procedure doesn't guarantee a live baby in this case, it will only be performed if my health is in danger.

(3) If we go in for labor and the baby is found to be in breech position, the midwives and doctors will deliver as breech.  Apparently, a "tested pelvis" (their lame words, not mine) can handle such a delivery with a small baby.

(4) If Allegra is born alive, our goal is to get home with her as soon as possible (within hours, not days).  One doctor asked us to consider if losing our baby on the 40-minute drive home is worth the rush.

Hopeless?  We are encouraged, perhaps foolishly, by the fact that Allegra has held on this long and hope she's holding out to meet her parents and siblings before passing.

1 comment:

  1. Ali, I just wanted to let you know what an inspiration you are to me. I truly look forward to your daily posts-- They inspire me to be a more positive and hopeful person. Thank you for sharing your journey and experiences with me.

    xo Corinne