Gia: Adopting a Child with Epidermolysis Bullosa (EB)

March 4, 2015 by nohandsbutours 2 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.


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!


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.


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!


~Guest post by Leslie

Disruption: the facts

March 3, 2015 by nohandsbutours 0 Comments

The beginning of March marks the start of a series where we will be discussing disruption and dissolution in adoption. We are treading prayerfully and lightly into this realm of the adoption world that is so often avoided. It is hard to talk about. It is complicated. And it is most definitely life altering to both the adoptive family and to the child needing a family.

We are also treading purposefully. Our hope is to present a series of informative posts that represent a multi-faceted look at an extremely complex subject. We also hope to create a place for dialogue to take place – that must take place – as families contemplate adoption, and prepare to adopt their children. As responsible adoptive parents, we must dialogue with our spouses, social workers, and families and friends about this reality, so that when difficulties arise we are better prepared, more informed and have access to a network of support.

In this series we will feature posts from a mother who disrupted, a mother who adopted from a disruption and an orphan advocate who shares her thoughts on the realities of disruption. We hope that over the course of this series the comment section here or on our Facebook page will be used for comments and questions as well, but we ask that all comments refrain from unkindness and/or judgment.

Disruption and dissolution are a heartbreaking reality, but by bringing this tough subject into the light our aim is to better prepare families for the sometimes difficult journey of adoption.


To open this series, we will start with the definitions of key terms as well as some basic facts on disruption and dissolution.

Guardianship and Harmonious Period:

Upon meeting and receiving their child in China, the Adoptive Parents (AP) sign temporary guardianship papers for that child. These papers allow AP to have what is referred to as the harmonious period (also termed the integration period). During this time the AP have not yet signed the legal adoption papers but rather have some time to spend with that child before making the binding commitment. The harmonious period graciously allows the family a brief view into the child and what bringing them into their family might look like. This is also a time of discovery for many families, there may be issues that are quickly apparent that where not listed in the file. These issues may be medical, emotional, institutional delays, or institutional behaviors. If a family is concerned that there is a medical issue which was not known previously, the in country guide can arrange for a medical exam to be performed during this time.


If the AP decide not to complete the adoption when the harmonious period is up, this is called a disruption. The child is returned to the civil affairs office. No legal papers are signed and the guardianship period expires. The child returns to their orphanage and the parents return to the US without a child. The US immigration paperwork which a family completes before traveling to China (I-800) is specific to that one child, so another child cannot be immediately matched during the same trip. The family would need to return to the US and their agency would walk them through their options.

Involuntary Disruption:

If a child is over the age of nine they are required to give a written statement agreeing to be adopted. It is possible that older children are not fully prepared for an upcoming adoption and struggle with the transition. If they refuse to sign the document agreeing to be adopted they will return to the orphanage. This decision and disruption is out of the control of the AP. The same would hold true in this case, the AP would need to return to the US to be rematched.

It is important to note that although this type of disruption does occur, it is not very common. The vast majority of disruptions are parent-led.


If the AP sign the adoption papers after the harmonious period, but later decide that they no longer wish to parent the child who has been legally adopted it is called a dissolution. This is quite different from a disruption and carries more legal ramifications. At this point, the AP will have promised to never abuse or abandon the child in two different instances, once when submitting the initial intent to adopt the child and then again during the official adoption proceedings. A dissolution is going back on that pledge and is seen in a very negative light by the CCCWA and Provincial officials.

If the dissolution occurs while still in China, paperwork must be completed with the Provincial Civil Affairs. A written statement must be provided in person explaining why the dissolution is occurring. The AP are required to appear before the Civil Affairs officials to legally terminate the adoption registration. If the family has already left the province and traveled to Guangzhou for the visa process they must return to the provincial city to terminate their parental rights. The child’s orphanage may or may not return any donation fees to the parents. The AP may or may not be permitted to be matched with another child after they return home. Additionally, the AP face a strong likelihood of not being permitted to adopt from China again in the future.

If the dissolution occurs once the child is in the US, the AP must immediately contact their adoption agency and submit in writing to the CCCWA the reason behind the dissolution. The agency would assist in the legal aspect of finding a new home for the child. The AP will be added to a list by the CCCWA and will likely not be allowed to adopt from China in the future.


The CCCWA published new rules in January of 2015 which included stricter rematching guidelines. These rules are twofold and greatly impact whether a family can be referred a new child: If there is a true discrepancy between the status of the child and what the file presented, and if the provincial office confirms these issues and approves it, the family may be rematched one they are back in the US. However, if the family “are being too choosy or behave improperly” during their time in China, or discover personal reasons leading to their inability to complete the adoption, the CCCWA will not rematch them and will not allow them to adopt from their country in the future.

It is also important to note that agencies may choose not to rematch a family depending on the circumstances surrounding the disruption or dissolution.

The Child:

A child returned to their Social Welfare Institution after a disruption or dissolution while still in China may or may not be registered again for adoption. They may declare that the child is unadoptable and will age out of the system on their fourteenth birthday. Preparing a child for adoption comes at a monetary expense and time commitment to the SWI, they tend to only prepare files for children who they think families would chose.

This is a very simple summary of some very complicated issues and situations. Please discuss any of these scenarios with your social worker. Education and preparation are key during the entire adoption process. This is especially true in regard to what to expect during the first few hours in China and the months which follow.

LWB: Thoughts on Re-Homing from an Adoption Professional
LWB: Realistic Expectations about Adoption Struggles
Rainbow Kids: When Families Fail

find my family: Rion

March 2, 2015 by nohandsbutours 0 Comments

Adorable and handsome Rion recently turned 8. He is waiting for a family on the shared list and he is diagnosed as having postoperative cleft lip and palate and epilepsy. As of Dec. 2011 he has stopped the medication he was taking for his epilepsy and it sounds as if he has not had any seizures since.


Rion is very active and personable boy. He is in first grade now. At first he struggled with sitting still and with his homework, but with patient guidance he has been improving in those areas. His favorite subjects are physical education, music, and art. Rion is described as an active and restless boy. He is extroverted and mild tempered. His speech is not clear because of his cleft lip and palate, but has no problem in daily communication. He is polite and mature. He gets along well with other kids and he is willing to help other kids too. When learning new concepts, his teachers need to explain slowly and repeat several times.


Rion adapts quickly to the outside environment and would not be nervous in a strange environment. He likes to run and jump and likes toys like Ultraman. Rion is attached to his ‘mother.’ He proudly says “this is my mother” when introducing her to others. He likes his aunts, uncles and other kids in the institute. He likes when the aunts and uncles take him and the other kids out to play. He is willing to be adopted and hopes he will have a forever family.


Since Rion is on the shared list he can be adopted by a family working with any agency. Contact the Advocacy Team for more information.

How Children’s Books Helped My Family

March 1, 2015 by nohandsbutours 1 Comments


Dr. Karyn Purvis said, “If you didn’t teach your child something then don’t assume he knows or understands it.” We have found this to be very true in our family. When my daughter joined our family last year, people were often curious about how her English language was progressing. Some assumed this would be the …Read More

What We Know…

February 28, 2015 by nohandsbutours 0 Comments


We know that adoption is beautiful, don’t we? We know that it is a wonderful way to build a family. We also know that it can be painful, and scary, and even though it can most definitely be a dream come true, it can also hold many frightening unknowns… We have three dreams come true, …Read More

find my family: larry

February 28, 2015 by nohandsbutours 0 Comments


Larry was born in September 2012 and diagnosed with congenital heart disease. Sweet Larry was found in a hotel dustbin as a newborn and taken to the hospital. At that time he had a hematoma on his scalp and began treatment for jaundice after entering an orphanage. His hematoma resolved on its own but it …Read More

out of the darkness

February 27, 2015 by nohandsbutours 3 Comments


I don’t think I will ever be the mom who believes God’s original and best plan for my daughter was for her to be in my home. I realize that’s a controversial statement, and perhaps many of the people reading this will feel something bristle inside of them as they think about their own precious …Read More

Medical Needs and Marriage: Ten Tips

February 26, 2015 by nohandsbutours 5 Comments


You adopted a child with medical needs and the game changed. The Coach altered the playbook. The new little life in your family has your whole team scrambling to reorient themselves. You survived the stretching adoption process with its paperwork, lack of control, waiting and financial stress. You made it home, and you’d like to …Read More

I don’t get it.

February 25, 2015 by nohandsbutours 8 Comments


I get it. There was a big crisis. In 1979, facing a huge and growing population, Chinese government officials created the “family planning policy” as the solution. Things were turned upside down as families who years before had been encouraged to build China by adding to their family were now told they could have one …Read More

find my family: Samantha

February 24, 2015 by nohandsbutours 0 Comments


Stunning Samantha is 11 years old. She is diagnosed with cerebral palsy with leg muscles weakness. She has been working hard to build her strength and while she does have difficulty walking, she can now walk up and down stairs while holding on to a railing! While she loves to learn, because of her delays …Read More