When my husband and I first began filling out our medical needs checklist we had no idea what most of the conditions were or what we could, as a family, even handle. We figured anything in the “mild needs” category could be managed.
It’s a funny thing that happens though when you see a child’s face before you read their file and know that the child is yours…. all of a sudden their needs don’t seem to matter so much.
When I saw Liam’s face on a waiting child advocacy page there was this instantaneous connection… and when I saw his special need listed as “chromosomal abnormality”, I was floored that this beautiful, four year old boy waited for a family.
This seemed like a non-need to me.
Upon reviewing his file though we saw that Liam’s condition went way beyond abnormal chromosomes. Liam had also been diagnosed with severe hypospadias. The opening of his urethra came out at the base of the penis and back between his testicles. The photos were a bit shocking, but they also provoked conversation between my husband and I on what we would do if we chose to move forward with adopting Liam.
We happened to have a friend whose son also had hypospadias so we reached out to her for support and advice. We asked her if she would adopt a child with this need knowing what may lie ahead… she said yes. Definitely!
She referred us to doctors in our area and told us whom to avoid. Deciding to adopt Liam came with many unknowns, but we felt we could be an understanding family to his unique situation and help navigate the tough decisions.
Learning about Disorders of Sexual Development (DSD) became a passion of mine. I wanted to find out how it happens during fetal development and what medically may be needed in the future. I wanted to learn about adults who grew up with DSD and if they had surgery as children what their thoughts were looking back. I researched associated syndromes with DSD and wondered what would change if Liam was found to have a genetic syndrome.
I knew that I needed to educate myself so I could be as prepared as possible once he came home. We talked about Liam’s special need with our two biological children who were 10 and 13 at the time. It was made clear that they were not to share any details regarding his condition – not because of being ashamed, but because it was Liam’s story to share.
Once we got to China and met Liam it was clear that the severity of his situation couldn’t be seen from the photos in his file. Our biggest concern became his health and wellness, and we wanted to make sure that medically he was doing well.
While the photos showed some of his issues, reality gave us a new perspective on how to best move forward. We wanted to find out if Liam had any female gonads internally. He also displayed other symptoms like extremely flat feet, disjointed fingers, and hyper flexible arm, leg, and hip joints which hadn’t been mentioned in his file, and could be markers of a genetic syndrome.
Once returning home we made an appointment with Mott Children’s Hospital, which had a clinic specializing in DSD in children. At our first clinic visit we met with a urologist, geneticist, endocrinologist, psychologist, and social worker. While it was a lengthy appointment, it was great to know all of Liam’s doctors would be working together on a plan and diagnosis for the road ahead.
We scheduled further genetic testing and diagnostic ultrasounds as well as and follow up visits with a cardiologist and orthopedist. Liam handled all these appointments wonderfully despite being looked at repeatedly. He enjoyed the atmosphere of the children’s hospital and never seemed to mind going.
Meeting with the psychologist at the DSD clinic truly was the most impactful. Dr. Sandberg helped us make the tough decisions and helped us through the emotional aspects of Liam’s DSD. He also reframed Disorders of Sexual Development into differences in Sexual Development.
Once Liam began preschool he helped us through the sharing of Liam’s condition with the teachers and what were reasonable expectations as far as privacy was concerned. Dr. Sandberg called us at home to see how we were adjusting to not only Liam’s condition, but to our adoption as a whole. His involvement definitely let us know that we had people fighting with us.
Liam’s genetic testing revealed that he likely has Partial Androgen Sensitivity Syndrome and this may cause issues as he approaches puberty. His body will have trouble using the testosterone it produces. Like the decision of surgery, the direction we go will depend on Liam and his input. This is his body and his future. We want him to have as much say in what happens to that body as possible.
Before we even met with our doctors, we planned to not do surgery on Liam’s genitals unless it was medically necessary. We made this choice after extensive research, and our team felt the same way. We will revisit the subject of surgery when and if Liam brings it up as he ages.
This can be a controversial choice, but our feeling is that God doesn’t make mistakes and that He created Liam in His image – regardless of the differences between him and most other five year old boys.
We realize there are many unknowns, but we love Liam just the same as our other children and do not feel this is a “special need”.
I believe that when God showed Liam’s face to me that day on the waiting child site, He knew we would be the right family for him through life.
I pray that our hearts stay open to the unknowns and that Liam always knows he is safe and loved. I also pray daily that other families will open their hearts to children with DSD.
– guest post by an anonymous mama; image by Tish Goff