Gia: Adopting a Child with Epidermolysis Bullosa (EB)

March 4, 2015 epidermolysis bullosa, Family Stories, Skin Conditions 3 Comments

When my husband and I began the adoption process, we knew we were open to adopting a child with special needs, but we didn’t have any specific need in mind. We had a very broad medical checklist, and we planned on getting our LID and having our agency match us with a child. But then I saw a picture of our daughter in a Facebook orphan advocacy group, a gorgeous little girl with a sweet smile and bandaged hands, and we knew we wanted to bring her home. Her file said her special need was epidermolysis bullosa (EB) which required baths and bandaging. After having her file reviewed by a dermatologist specializing in EB, we decided her care sounded very doable for our family.

Gia1

Over the next several months, as we completed our paperwork, I did a lot of research on EB and the more I learned the scarier it sounded. I learned that EB is definitely not just about skin, it affects the entire body. I familiarized myself with wound care, medical supplies, specialists, and also read stories of children dying at young ages from the disease. Every day we worried about the burden Gia may place on our family, but she had survived over three years in an orphanage with EB, and we felt she deserved the chance to live more comfortably in the United States with the love of a family.

Our trip to China approached quickly, and packing included a big suitcase of supplies for Gia that included bandages, scissors, medicines, needles, soaps and lotions, supplements, and baby food (what we packed was just a fraction of what we use on her now!). We were nervous about all the unknowns ahead of us, but we were very fortunate that Gia was staying at Little Flower in Beijing, so not only had we been given pictures and updates throughout our wait, we also had the opportunity to spend two days there prior to Gotcha Day learning how to take care of her.

The first time we had to do Gia’s bath and bandages on our own was one of the hardest things I’ve ever done. She was used to choosing who bathed her, so having two clueless Americans swoop in and take control from her was NOT something she was happy with, and she screamed through most of cutting her old bandages off and bathing her. Seeing the wounds on her legs made my heart stop and stomach turn; they were as bad as full-thickness burns and I had never seen anything like it, especially not on one of my children. After her bath we took her to the medical treatment room to work on her. My husband and I stood in a room the size of a closet, under a heat lamp, with a screaming little girl covered in open wounds between us, and surrounded by medical supplies we’d never used before; it was surreal and terrifying! I was shaking but my husband was calm, so I took his lead. We lanced blisters, trimmed dead skin, applied medicines, dressed wounds, and then wrapped her up with gauze, all while singing songs to keep her calm. After we were done, it was all I could do to not just break down and cry, but we knew the nannies were watching us with their beloved little girl, so we smiled, said it went okay, and took her downstairs to get her dressed and give her some ice cream to thank her for putting up with us!

Gia2

The rest of the trip was also pretty tough. We loved getting to know our Gia and she was great at communicating with us! Between appointments we spent our days sightseeing in local parks, and she loved singing, playing, and having two adults all to herself. The daily bath and bandage change was something that loomed over us though, and the thought of putting her through pain every day for so many years to come was overwhelming. It was VERY hard for the first week or so, but eventually she stopped being so fearful and started enjoying her bath, we were getting through bandaging pretty quickly, and amazingly enough, we were already seeing improvements in her skin. One evening after bath, we were all watching Lilo & Stitch on HBO in the hotel, and my hubby asked me if I could believe that for three years, nobody stepped forward and claimed this pretty little girl. My heart melted and I knew between his strength and Gia’s, we would be okay.

Gia3

After we got home from China, we starting using medical supplies made especially for children with EB, and that made a huge difference in healing chronic wounds. Improved diet and hydration made her complexion glow and made her less fragile too. We also pushed baths and bandage changes back to every other day, which better fit our family’s routine. We have a big move coming up so that we can be closer to an EB clinic in Denver, and they should be able to help us with healing the wounds on her legs. The biggest reward has not just been seeing Gia’s skin improve, but seeing her become happier and more relaxed each day because she physically and emotionally just FEELS better. It has truly been miraculous to see her heal, grow stronger, and bond with our family! In fact, seeing her transition has inspired us to now adopt another child from China with EB, a little sister for Gia. Although it will be more time consuming to take care of two children with EB, we know that improving her quality of life and watching her grow up with Gia will make it more than worthwhile!

Family

~Guest post by Leslie



3 responses to “Gia: Adopting a Child with Epidermolysis Bullosa (EB)”

  1. Debbie says:

    We had our CA the same day as them, and I remember seeing the familiar face from Little Flower. I am so happy to hear that she is doing so well and her skin is improving! Congratulations on your new baby too!

  2. Michelle McCormick says:

    LOVED reading your family’s story and adoption journey to Gia!!! She is an incredible little girl with the fingerprints of God all over her!!! LOVE how He chose her just for y’all!!!
    Blessings to your sweet family and our family will be praying for you as you adopt another sweet girl!!!

  3. Suzanne says:

    Wow! Talk about timing! Two days ago I requested the file of a little girl with EB. I am already mom to three daughters from China and have been praying for God to speak to me about this little girl. Thank you for sharing your story. It both inspires and worries me. If you have a blog I would love to follow along, learn more, find resources etc. Again, thank you!

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