Faces of Loss, Faces of Hope

Melanie

 Mom to Evie Nanette

June 14th, 2007-June 15th, 2007

and Allyson Belle

February 27th, 2009-June 11th, 2010

I am a face of 2 infant deaths.  My first daughter Evie Nanette,  6-14-07 to 6-15-07,  was born with a birth defect called a CDH. Congenital Diaphragmatic Hernia.  A hole in her diaphragm that allowed all her bottom organs, such as the liver, stomach, and intestines, to enter the top half of the body.  Her stomach was next to her heart.  This the doctors told us was a fluke and would never happen again. 

There was on a 2% chance of it happing to any other child in our family.  We were told this at the @8 week appointment.  1 and 3,000 babies get it a year.  There is a 50% chance of even living to birth.  We hoped for the best.  Evie's liver (a hard organ) made it through the hole and made impossible for her to develop her left lung properly.  She also received a brain hemorrhage at birth that made it impossible for her to be put on a machine called ECMO.  A machine that pumped the blood out of the body, oxygenated it, and pumped it back into the body.  She passed away 6-15-07 on my husbands and I's 5th wedding anniversary.

Allyson Belle was born 6 and a half weeks early on 2-27-09. She, like her sister Evie, also had a CDH. We found this out at 17 week ultrasound.  Allyson spent 4 months in the NICU and was in and out of the hospital due to her diaphragm repair braking.  She spent the month of Feb. 2010 in intensive care unit.  She was on oxygen most of her life and had a NG tube for  night feeds. Through it all she was so happy to be alive. 

On 6-7-10 she stopped breathing during the night which led to a heart attack.  The next morning I found her not breathing and called 911.  She was rushed to the hospital.  She was in a coma from 6-7-10 to 6-11-10 when my husband and I decided to remove life support.  She suffered massive brain damage and had no brain function.  She passed away on her own Friday June 11, 2010.