By Caroline Ruhl
Amelia Grace was born in Texas in September of 2016, but my journey to her began in 2010 in rural Romania, where country roads are populated by as many horse carts as cars. Behind a large metal gate, well kept grounds with pretty, but crumbling, cement buildings were hidden.
Inside, several dozen babies and toddlers played with Romanian staff and international volunteers. But in isolation lay a tiny boy covered in wounds and blue antiseptic.
As a volunteer at this failure to thrive clinic/orphanage, I was present the day Raul arrived. I was immediately drawn to him as he looked at me quizzically with his big brown eyes. Raul was born with severe recessive dystrophic epidermolysis bullosa (EB) and was almost five months old.
The medical care Raul received was alarming, and not in line with recommended care for his condition. While there were staff at the center that loved him, they did not have the resources to care for him. The complexity of his care prevented his biological family from bringing him home.
Bringing Raul Home
Thus, I began the process to bring Raul to the U.S. for medical care. After several roadblocks, I flew Raul from Romania to the U.S. in the summer of 2011. Romania does not currently have international adoption, so with the consent of his birth family, I was able to gain permanent guardianship here in the U.S.
Despite extreme medical hardship, Raul lived a wonderful life! He attended school, went on vacations, LOVED vehicles, and even played on a baseball team (in his power chair affectionately dubbed “big red”). Raul was a very spunky child, with an amazing sense of humor. Because I was also a foster parent, Raul became the big brother to many!
In 2015, we moved to Minnesota for eight months for Raul to take part in a bone marrow transplant trial for his severe EB. He was inpatient in the hospital every day of those eight months, and passed away in May 2016 due to complications post-transplant. I returned to Massachusetts heartbroken. However, I knew that ultimately I would adopt another child with medical needs.
Raul had taught be so much: about medical care, about being a parent, and about living life to the fullest! I returned to fostering babies and toddlers, and briefly pursued an international adoption of another child with severe EB, but unfortunately that adoption failed when the child was too ill to travel. When I returned to the U.S. from that adoption trip, I decided to look into domestic adoption.
That is when I first learned about Amelia. Wispy light brown hair, a big beautiful blue eye, and the cutest little pursed lips! Yes, one blue eye. Amelia was born with Goltz syndrome! At the time we thought she had anophthalmia, and it actually turned out to be microphthalmia, but she cannot open her left eye without a prosthetic shell in place.
Amelia’s birth parents lovingly chose to place her for adoption, and spent time carefully pouring over profiles of prospective adoptive families. They chose me to be her mother, and each day since I have felt like the luckiest mom in the world!
I travelled to Texas the day after Thanksgiving, and met Amelia the following morning. That first night in Texas was a long one as I waited anxiously to meet Amelia and her birth parents! It was love at first sight, and her birth parents were wonderful and loving people.
We spent about 10 days in Texas waiting for the paperwork to clear for us to travel back to Massachusetts. My parents each spent a few days with us, and we explored the area a bit. Of course, we had to buy Amelia a tiny pink pair of cowboy boots along the way!
Creating Her Care Provider Team
Back in Massachusetts we began to see the list of specialists I had been instructed to make appointments with. In the beginning it seemed like for every one specialist we saw, two more were added! Amelia turned three months old the day after coming home from Texas, but was the size of an average newborn.
She had a pretty lengthy list of congenital anomalies, but was the sweetest baby! Right now, Amelia’s diagnosis is just clinical based on family history and her presentation. We are still waiting on genetic testing results, but we joke that whatever genetic anomaly she has certainly gave her an extra dose of cuteness!
In those early days, I found myself spending a lot of time researching Goltz syndrome, and I stumbled across the National Foundation for Ectodermal Dysplasias (NFED) website. The NFED has the most clear information on Goltz syndrome that I could find. I was also lucky to have found an online group of Goltz families before I even traveled to meet Amelia. One parent that I had “met” in this group answering all sorts of questions for me during my time in Texas!
Like Raul, Amelia likes to keep us on our toes! At four and a half months old, Amelia became jaundiced and was diagnosed with biliary atresia during a major nine-hour surgery. It was hard seeing such a tiny baby go through such a big operation, but she came through it with flying colors. She continues to amaze her liver team with how well she is doing!
Adopting a Child With a Rare Condition
Choosing to adopt a child with a rare condition can be daunting. While you may know what syndrome your child has, there can be so little information available, and there are still many unknowns. I actually just recently received Amelia’s medical records from the first three months of her life, seven months later! Along with her issues related to Goltz syndrome, Amelia has biliary atresia, and significant gastrointestinal problems that we do not believe can be attributed to Goltz. Thanks to all that Raul taught me, I felt prepared to deal with whatever needs may arise.
Amelia may never have met her big brother, but she is certainly taking after him. She is spunky, happy, funny, easy going, and a joy to be around! She’s got a big personality for such a tiny body! Goltz syndrome and her other medical needs will not hold Amelia back, but they do make her one of a kind, and I am so lucky to be her mom!
Please consider if you might be the family that a child with ectodermal dysplasia is waiting for! There are children around the world with different types of ectodermal dysplasia waiting for a family to call their own!
Caroline Ruhl is a guest blogger for the NFED. She is the mother of a child with Goltz syndrome.