Butterfly Baby

There’s nothing like the birth of a baby to make me homesick for Connecticut. Avery May Silva, born June 1st, 2017, did just that to me. She is my grand-niece, her parents are Tom and Kristin Dailey Silva. My brother, Wendell Dailey, is Avery's grandfather. It’s always been hard living in Minnesota, so far away from family. We miss a lot; including birthdays, graduations, and new babies in the family.

Butterfly Baby
Avery May Silva

My Niece Kristin, grand-nephew Mason and grand-niece Avery May

Avery was born at Lawrence and Memorial Hospital in New London, Connecticut. Right away, Doctors noticed something different about her. She’d lost all her fingernails and had blisters on her body. They’d never seen this before. The decision was made to move Avery to Yale New Haven NICU for testing.

Kristin holding Avery May at Yale NICU

Tom with Avery

Life is not perfect and sometimes life can be tragic. In some cruel twist of fate, beautiful Avery May was born with a rare genetic skin disease called Epidermolysis Bullosa or EB. There are 4 main types of EB; Avery has Junctional EB or JEB which is one of the worst forms. Patients with JEB do not produce enough of a protein which helps attach the top layer of skin to underlying layers; so any touch, scratching or friction can cause blisters to form. These blisters have to be lanced and drained then wrapped in a special dressing to ward off infection. This will be Avery’s life, a life filled with wound care and pain management. Her parents will have to watch her suffer and will have to protect her from hurting herself in ways most parents don’t even think about. Babies born with EB have skin so fragile that they are referred to as Butterfly Children. Sometimes children with EB have to wear special clothing that is void of seams, snaps or zippers in order to limit friction to their delicate skin. The fabric is called Dermasilk and is very expensive. There is no cure for this disease at this time.

Avery remained at the Yale NICU for almost three weeks. She was placed in a special incubator that was temperature controlled. It is hard to cuddle a baby whose skin is as fragile as the wings of a butterfly, so touch was reserved for nursing Avery and for skin to skin contact with her parents. It had to be heart wrenching for Kristin and Tommy to be off limits to their beautiful newborn.

Avery May ~ Happy to be going home!

Avery has a big sister, Alyssa, and a big brother, Mason. Kristin and Tom must juggle their other children's needs with those of Ms. Avery. The arrival of a newborn surely ensures change in a family. In Avery's case, the magnitude is immeasurable.

Alyssa, Tom, Kristin & Mason
Alyssa's 8th Grade Graduation

Our beautiful butterfly baby, Avery May, has a tough road ahead of her. Her family is learning how to cope with this illness and how to help Avery remain safe and healthy as the blisters form and need to be managed. Their joy over this baby’s arrival has been replaced with stress and concern over her future. There are a lot of questions regarding her long term prognosis! They need all the help they can get.

Some promising work is being done with Bone Marrow Transplants. Avery has been referred to a EB specialist at UMASS Children’s Hospital. For now, Tom & Kristin face each day, blessed with family and friends who want to help in any way they can. Avery’s local pediatrician is not experienced in EB treatment so Yale will be the first contact in all issues pertaining to JEB. There is nothing easy about managing this disease.

Avery’s grandmother, Linda Barnes has started a YOUCARING site for Avery to help defray the mounting medical bills. You can follow Avery’s journey here. If you’d like to make a financial donation this is where you can do so. You can also leave words of encouragement for Tom & Kristin.

https://www.youcaring.com/averymaysilva-851534

Please pray for our beautiful butterfly baby, Avery May. We believe in the power and comfort it will bring. Follow Avery’s progress and offer support if you can. This is going to be a long road for my grand-niece. We can only hope that a treatment or cure is in the near future.