Abigail Grace Earnest

This memorial website was created to remember our baby girl, Abigail Grace Earnest who was born in Little Rock, Arkansas on February 20, 2006 and passed away on May 14, 2008. You will live forever in our memories and always in our hearts.

     Abigail Grace was delivered by ceserean 2 months early for heart arrythmias in utero. She spent 8 weeks in the NICU and then was home for about a month before she became very dehydrated and was admitted to the hospital. She spent 4 months in the hospital in that single admission. She always had diarrhea so all of her feeds were stopped and she was placed on strictly IV fluids. She had a g-tube placed which she got continuous feeds through.She got half of her nutrition through TPN which goes in an IV line called a central line. She had several PICC lines placed. Her main problem was that she could not absorb nutrients from food and she had chronic diarrhea her whole life. I mean she NEVER had a formed stool in her entire life. Her other and equally important problem was an immune problem with her B cells. The problem is that even at age 2, no one knew why her body was doing this. The doctors did not have any answers. She went to Cincinnati Children's because they are the top when it comes to GI and Immunology but they still didn't know why her gut would not take in the nutrition. Also something very interesting is that Abby was born with hair so brittle it would fall out if you touched it. Her organs were affected by her immune disorder as well. Her liver and spleen were very enlarged. Abby was on several medications, Prograf at one time, Prednisone another time. She got IVIG and Pentamidine every month. She required blood transfusions about once a month and she spent more time in the hospital than out. She was the most delightful child even with all the things she had to endure. I mean she had a smile that would melt your heart and her hugs made you feel like you were the only person in the whole world that she really loved THAT much!

In April, 2008 Abby was admitted to ACH in septic shock. She was placed on a ventilator. She spent 6 weeks there before she passed away. I was able to hold Abby for the first time since she was admitted and she died in my arms on May 14, 2008 at the age of two. I miss her SO VERY MUCH but I am so thankful that she is not suffering anymore.

The week before she passed, I found her diagnosis on OJRD (Orphanet Journal for Rare Diseases). It is called Syndromic Diarrhea, Phenotypic Diarrhea or Tricho-Hepato-Enteric Syndrome. All of the information I have found has been from France. I am attempting to find others with this syndrome or at least find out if there are any other cases here in the US.