Gianna Caeli’s Story

Site created on October 16, 2010

Celebrate the life of our daughter and sister, Gianna Caeli, who was diagnosed 10/15/2010 with Trisomy 18.
She was born at home 12/22 and lived 14 wonderful days, departing this life for Eternity on 1/5/11.  
We honor the gift she is to us and to the world.
Gianna (jee-AHN-uh) "God's grace"   
Caeli (CHAY-lee or KAY-lee) "(from) Heaven"



Trisomy 18 is not a one-size-fits-all diagnosis, and certainly not a prognosis. It shouldn’t automatically be considered a condition which is incompatible with life!!

Gianna was conceived in March 2010, and is our 12th child.  She is sister to four siblings who've gone Home early to God: Kelly (m/c 1996), Loren Joseph (stillborn 35 weeks, anencephaly, 1999), Tess Elena (m/c 2002), Fiona Maeve (m/c 2010) and has seven living siblings here on earth: Ean, Erin, Kate, Claire, Aidan, Jack, and Joseph.

We announced Gianna's conception to our children out at the Hendry Farm on Easter Sunday - how appropriate to announce new life on THE DAY of NEW LIFE - by placing a poem in an Easter egg, which, when opened, shared the good news.  The children were ecstatic!

AM had a sense from very early on that something was amiss with the baby, but kept quiet about her intuition for months. 

On 10/1, at her regular midwife appointment, some measurements were off, so she requested a fetal survey ultrasound, done locally 10/5.  The scan showed three areas of concern (two vessel umbilical cord, enlarged area of the brain, and excess amniotic fluid) any one of which occurring in isolation wouldn't be a concern, but together pointed at something more serious. 

AM googled incessantly and discovered Trisomy 18.  She hoped against hope that baby didn't have it, but wasn't surprised on 10/14, when visiting Swedish Perinatal Medicine, that the scan and amniocentesis confirmed the suspicion. 

That was the day Gianna Caeli received her name. 

Leaving Swedish, we made plans for a death instead of a birth, but were subsequently exceedingly surprised to learn that children with Trisomy 18 can and do live, some for years.  It is our prayerful hope that Gianna will live outside AM for as long as God wills it...and for the Grace needed to accept whatEVER may be His will.

We are grateful for the chance to parent Gianna (and all her siblings) and feel so thankful God has sent her to us.

Newest Update

Journal entry by Ann Marie Henninger

What It Means to Move On - just came up on my social media feed from 8 years ago. Worth a share.
Day 253

Moving on does not mean . . .
• you forget the person.
• you never feel the pain of your loss.
• you believe that life is fair.

Moving on does mean . . .
• you experience a lessening of the pain.
• you can treasure your best memories of the person who has died.
• you can realistically accept the different aspects of your loss.
• you can form new relationships, try new things.

Moving on also means . . .
• you grow in grace and in your walk with God.
• you accept your loss and forgive others.
• you understand that both joy and loss are a part of life.
• you believe that God is good, even when life isn't.

"I have told you this so that my joy may be in you and that your joy may be complete" (John 15:11).

Holy God, sometimes moving on seems impossible. Continue to remind me that I cannot move on through my own strength, but only through an extension of Yours. Amen.

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