A new year, new beginnings. As we all think about New Year’s
resolutions and fresh starts, it’s hard not to think also of the story of this
month’s featured child: Jie, a little girl with Epidermolysis bullosa, or EB,
who had her own fresh start with Little Flower when she came to us in April of
2012.
EB is a skin disease resulting in extreme skin fragility; just a small
scratch or rub can cause painful wounds. On top of that, EB often causes
serious itchiness, and the resulting scratching can open up new wounds and make
old ones worse. EB wounds can occur anywhere on or in the body and have often
been compared to severe burns. Children with this condition are often described
as “butterfly babies.” There’s an incidence in the world of just 1/50,000.
Jie was already 13 months old and weighed just 3.6 KG when she arrived
at Little Flower. Despite being over a year old, she was at about the same size
and developmental level of a newborn. Every calorie and nutrient she took in
was used toward healing her wounds, and there was little left over to help her
grow. When she first arrived, she was totally shut down. She had been in a
hospital much of the entire first year of her life, as the orphanage didn’t
have the ability to care for a child with such a complex medical problem. In
that sterile environment, she grew to fear other people.
Like all children with EB, little Jie needed her bandages changed
regularly. She soon began to associate her caregivers negatively with painful
procedures. The wound care in the hospital certainly wasn’t done with the goal
of pain relief. The busy hospital nurses were not able to hold or interact with
her much, other than to get those bandages changed. The results of that time
were evident when she arrived.
She wouldn’t make eye contact with our nannies and medical staff. Even
the presence of a caregiver standing near her crib made her turn away.
In the beginning, it was hard to know where to start. Just speaking to
her quietly, in a calm and soothing voice would make her upset. No one could
touch her. Even feeding was a difficult experience. She would take her arm and
cover her face, blocking out the world around her—the world that she’d come to
fear. It took a long time before she was able to be held by the nannies without
finding it stressful.
Our goal then was always to
not just care for her medically, but to also gain her trust. We treated her
wounds as gently as possible and tried to show her that people could also be
capable of love, caring, and fun. It was a slow but sure process, and she
eventually began to open up. Here's one of our earlier photos of her:
Soon, she was able to interact with others—to learn how to play, talk,
and smile.
As she grew more accepting of her environment and the people in it, she
moved downstairs to the toddler room and met some new friends.
Today, Jie is a completely different little girl. About a year after
she arrived, the leaders from her orphanage came to the Little Flower Infant
Care Home in Beijing to visit her. They absolutely couldn’t believe that she
was the same child. There was nothing but amazement on their faces as they
watched her play and interact with the nannies and the other babies.
Sometimes, new beginnings aren’t just about physical transformations.
There’s currently no cure for EB. We just make sure that little Jie is as happy
and as comfortable as possible while she is with us. But new beginnings can
also be about emotional and psychological change.
For the first year of her life, she had so little human interaction beyond
the wound care that she feared other people more than anything. During her time
at Little Flower, she’s grown to trust her caregivers, socialize with the other
toddlers, and enjoy life.
Jie is the third child we’ve cared for with EB. The other two children
have found their forever families and we’re now hoping that Jie will soon be
adopted as well.
Right now, we can definitively say that she’s a very clever little
girl. After she moved downstairs to the toddler room, it only took her two days
before she knew the names of all her new toddler buddies. She loves to sleep,
especially during her daily afternoon nap. And she enjoys hanging out with her
friends in the playroom.
As you think about your goals for this year, remember that new
beginnings are always possible. Jie had a new beginning with Little Flower, and
we hope that she’ll have many more when she finds her forever family.
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