Heartbreaking: Parents Can't Hold Baby For Fear Her Skin Will Come Off

LEDYARD, CT — The minute she was born on June 1, Avery May Silva's fingernails were remarkably long and were peeling off like crepe paper. She had blisters all over her body, and doctors were not sure why. The newborn soon was rushed to Yale New Haven Hospital for genetic testing. She would not be held by her mother and father for the first three and half weeks of her life. To hold her would have caused her skin to peel off.

Doctors diagnosed little baby Avery with epidermolysis bullosa (EB), a rare genetic skin and connective tissue disease. EB affects one out of 20,000 births in the United States, according to the Dystrophic Epidermolysis Bullosa Research Association (debra) of America. There is no cure.

There are many genetic and symptomatic variations of EB, but in all cases the patient suffers extremely fragile skin that blisters and tears from minor friction or trauma.

Avery's mom's aunt, Jodie Dunn, reached out to Patch in an effort to spread awareness about EB and the effects it has on those who suffer with it.

“It’s excruciating," Dunn said in an interview with Patch. "Basically it’s a rare genetic condition that affects the protein, sort of like the glue that holds you together. Well, she’s missing that glue.”

Dunn said the condition is so rare doctors do not often test for it during pregnancy. She also said Avery's mother, 35-year old Kristin Silva, had a number of tests and ultrasounds prior to her birth.

“Any slight touch or friction, even just picking her up, makes her skin flake off and cause big wounds or blisters that have to be popped," Dunn said. “I had never even heard of EB until little Avery was born with it.”

While mild forms of EB can improve with age, serious forms of EB have a very high death rate, according to Medline Plus.

“As of this point there is no cure," Dunn said. "There is research going on, but this [condition] is not something she will grow out of.”

A Day In The Life

According to the family's YouCaring page, the only options available for people with EB are daily wound care, pain management and protective bandaging.

Avery is no exception.

“She’s always wrapped pretty much from head to toe in bandages," Dunn said. “[My niece] actually wraps her like a mummy. Her legs, fingers and even her face. They have to wrap her up like that all the time.”

Wound preparation alone takes at least an hour. Dunn said Avery screams during the entire wrapping process.

To bathe their youngest child, Silva and her husband, Tommy, place Avery in a little mesh with a towel on top of it. They will then use special 100 percent cotton silk cloths and run water over her.

"If you’re going to give her a bath, you have to get her bandaged up to the point where she can handle it," Dunn said. "It takes like an hour and half each time we do it.”

Dunn said they cannot use typical baby shampoo on Avery, as it would irritate her skin. The same goes for her bandages, which need to be specially ordered.

Sleeping is also rough for the baby. She cannot lay flat because of the sores in her throat. Due to this, she is placed in a sort of bassinet where she can lay at an approximately 45-degree angle.

Should Avery get tired and rub her eyes, her little fists could cause bleeding. If she were to turn her head in the middle of the night, her ears could bleed, too.

“The biggest concern with EB is that all these wounds are open and susceptible to infection," Dunn said.

The baby's aunt also pointed out how EB affects Avery's fingers, which run straight but appear almost bulbous at the tips.

“The tips of her fingers almost look like tree frog fingers," Dunn said. "They are raw and red at the very end, and there are no fingernails.”

A frog might not be the most apt animal to describe the effects of EB. Children with this condition are actually considered "Butterfly Children" due to their skin being as frail and fragile as butterfly wings.

Through their YouCaring page and other means, Avery's family is hoping to spread awareness about EB and what other butterfly children suffer with on a daily basis.

“I think the more people that know about EB, the more there will be funding for it," Dunn said. "They can come up with a cure, but it takes money to get to that. The more people are aware about it, you never know where that last extra dollar might come from.”

Two Heroes

Dunn said her niece has not gotten much sleep the past two months because Avery is up almost every hour.

Since her birth almost two months ago, Avery has gained just one pound. When she eats, the food often causes her to gag and vomit. She must be monitored throughout her feeding.

“Her little body is now using every ounce of nutrition she gets to heal her wounds," Dunn said.

The possibility of putting in a feeding tube has come up to remedy this. Dunn said this could be another big problem because doctors would need to puncture Avery's skin for the tube.

Despite these many problems, Dunn said her niece has not lost hope. Far from it.

“My niece right now is like my hero," Dunn said. "I was worried about how she was going to handle it with a 4-year old and her other [two] kids. It’s 24/7 care, not just like raising a regular newborn.”

Dunn said Silva always has been a strong girl, but she never knew how strong her niece was until now. Though she must struggle and sometimes inflict pain on her little baby, Silva still gets up and gets the job done.

“She doesn't have time to just sit down and have a breakdown," Dunn said. "She just keeps moving, and she just doesn’t think about the what-ifs.”

Silva is not the only one capable of amazing things despite the hard struggle ahead of her. Dunn said one of the sores on Avery's cheek has actually formed the shape of a butterfly, almost like a symbol of her sweet demeanor despite all the pain.

She has become a literal butterfly baby.

“This little girl is still so sweet," Dunn said, "even with all these little sores on her face. It’s amazing.”

To help Avery May Silva fight EB, donate to the family's YouCaring page. (To sign up for free, local breaking news alerts from more than 100 Connecticut communities click here.)

Images courtesy Jodie Dunn