When you start down the road of adopting of a Special Needs child from China often the first thing you do is fill out your Medical Check List. This Medical Check List tells your adoption agency what type of medical needs you are prepared for in the child you are considering adopting. This may sound a little harsh and can feel awkward like you are rejecting a child on something they can't help. After all if you gave birth to a child with these issues you would deal with it, right?? Of course, but adoption is not the same as giving birth to a child. Children who have already suffered the loss of their first families deserve adoptive families prepared to meet their needs. Perhaps you live in a 3 story home with stairs everywhere. Best to not adopt a wheelchair dependent child. Perhaps a child already in your home suffers from separation anxiety. Best to not adopt a child who will be in the hospital weeks on end. Perhaps your insurance does not cover speech therapy? Best to avoid a child who will need extensive speech therapy. No one I know fills these out lightly. Most spend hours researching, praying, pondering, researching, and praying some more. I know we did.
Along the way in the adoption process you learn a few things. One of them is that the medical files aren't always accurate. You'll hear veterans say "prepare for the worst, hope for the best". You'll hear talk of "leaps of faith" and hear stories of people who walked forward when it was obvious they had not been given the full picture ahead of time. Sometimes you are presented with a child who's need you checked "no" on in that medical check list. This is one of those stories.
I clearly remember the first doctor who reviewed Dragonfly's file saying it was the scantest she had ever seen. It was very basic and only listed her obvious upper limb different which we knew to be radial aplasia and "splay foot", a rarely used term, which means flat arches. There was little to go on on this last diagnosis except a picture of a normal looking foot and an x-ray stating all the bones in the ankle/foot were normal. We knew that additional issues are not uncommon with children born with radial aplasia, but there just wasn't more info to go on. So we took that the leap of faith and hoped for the best.
We knew immediately in China that there was definitely more going on then we had been told. It also became clear that information has been actively withheld from her file. I assume that this was done with the best of intentions, but, honestly, I'm still mad about it. That issue is a whole other post, so I'll leave it here.
Despite knowing immediately that our girl was dealing with something more, it actually took us quite some time to get to the root cause. This was mostly do to a doctor who didn't listen to what I have to say (also another post!). Finally in early Sept we got in to see the right doctors and got the right tests ordered. Dragonfly had to have an MRI which required her to be sedated. She was a total champ.
That MRI gave us our diagnosis, sacral agenesis or Caudal Regression syndrome. Our girl is missing the bottom bones of her spine! This explains why she didn't walk at all until the age of 2, and why she could still only take a few halting steps when she came to us at 28 months. It explains why her ankles turn on her when she stands, and why her right foot drags a bit. It explains her huge thighs and teeny, tiny calves. See Miss Dragonfly is literally a walking miracle. It is by her strenght of will and the Grace of God that she learned to walk independently at all. Now that we know what is going on we can give her the support she needs which at this point includes braces for her feet and may eventually include braces up to her knees.
We don't know everything this will mean for Dragonfly's future, but we know Dragonfly is indeed a special little girl. Yes, we checked "no" to this need on that check list. I'd be lying if I said it was always easy. We've had to travel over 4 hours each way to find the medical care Dragonfly needs and, since the majority of her 9 doctors are located there, it's a trip we're making often. Despite all this, Dragonfly IS a blessing, and we are BLESSED to be her family.