At the beginning of our process, Tom and I filled out a medical conditions check-list. This was one of the hardest things we have done. Conditions ranged from umbilical hernia (No big deal. Graham has one.) to cancer and everything in between. We selected much of what was on the list, but not everything, which was hard. I was prepared for a congenital heart defect. There were so many other conditions on the list, but I worked in pediatric cardiology for the first 5 years of my career, and this is what I am familiar with. Despite it being a very serious and often life-threatening diagnosis, it's my comfort zone. Oh, how God likes to challenge our comfort zones. Ellie, to our knowledge, does not have a heart defect.
Ellie's special need is not able to be kept secret for her privacy or something she will just have to deal with short term or intermittently or something that will be surgically corrected and just a part of her medical history. Because of this, we have chosen to educate our family and friends regarding her diagnosis.
Ellie's file states that she has "abnormalities in all four limbs". After consultations with five different medical specialties, everyone agrees so far that she most likely has amniotic band syndrome. I have found a great website that summarizes what this is, so I'll let them explain.
"One of the primary causes of deformities of the fingers and toes found in children in China is a result of Amniotic Band Syndrome (ABS). ABS results in congenital birth defects believed to be caused by entrapment of fetal parts (usually a limb or digits) in fibrous amniotic bands while in utero.
Some common deformities that result from ABS are:
- missing digits
- missing limbs
- webbing between fingers/toes
- fused fingers/toes
- clubfoot (sometimes)
- cleft lip/palate (rarely)
This is a birth defect that in no way impairs the cognitive function of the baby; it is strictly a physical issue. In some cases, there is a need for surgery to create separation of the webbing to increase use and mobility. In the cases where a limb is missing, often no surgery is needed." - No Hands But Ours
All four of Ellie's limbs are affected. Her toes on both feet are minimally affected and from what orthopedics can tell, she shouldn't have any significant challenges there. Two fingers on her right hand are affected, but appear to have pretty good function. Her left hand is most severely affected and was not able to develop typically below her mid-forearmish area. Initially, adopting a child with a limb difference terrified me, but Tom (our usual family medical freaker outer) really brought it into perspective. She is healthy! Yes, she does have limb differences. This will present challenges her entire life, most of which will be socially related, but as far as we know otherwise, she is physically healthy. Her blood work is good. Tests for serious communicable diseases were negative. Her development seems to be on track. Yes, she could require some surgeries/therapies, but she is a happy, healthy kiddo.
People have asked us about prosthetics. We will make everything she may need available to her while she is young, but we will let her decide about prosthetics when she is older. From the research we have done, we have learned that most children/adults with congenital limb differences DO NOT use prosthetics. They don't need to learn how to do things with an appendage they never had, like I would if I were to suddenly lose my hand. A prosthetic takes away from the functional use of that limb because prosthetics just can't sense temperature, pressure, texture, all the things we rely on everyday to navigate our world. There may come a time where she wants to use one, and that's fine. It's really up to her! Our main goal is to help her know that this is how God Made Her. Perfect, exactly how she is.
I contacted another mom with two daughters with amniotic band syndrome. She helped explain some things from a mom perspective and really helped me to feel at peace with the whole thing, excited even! She said that there has been very little she has had to "teach" her daughters how to do and that there are amazing resources available that I can use when the time comes to teach her the things I will have to teach her anyways, like tying her shoes.
Our pediatrician recommended that we see a pediatric hand specialist once Ellie is home. For obvious reasons, this orthopedic subspecialty isn't available at every hospital, even every children's hospital. Similarly, our International Adoption Clinic is in Orlando. Well, guess where their pediatric hand specialist is? Yup. Jacksonville. Literally right up the road! There is also a Shriner's Hospital in Tampa that we would like to see and may pursue another opinion as well. We aren't looking for them to create a left hand or anything like that, we just want to make the best decision possible as far surgery (or not) for function and to hear their recommendations for her left arm, where it appears she could need a revision to the banding site. Sometimes these sites have to be surgically revised so that circulation to the area is not compromised as she grows.
As far as Ellie's future is concerned, she will be just fine. The blessing of a congenital limb difference is that she has never known any different. Our biggest challenge will be social as she gets older and realizes she is different, but then, we are all different, some differences are just more visible than others. We, and her family and friends, will help her navigate things and educate others as needed. She will learn to educate people from a very early age. I think we'll all learn from her. While congenital limb differences are her medical "special need", her biggest and most serious need is for love and a family, and we are so proud to call her ours!
I wanted to include some links to articles and blogs I have found helpful as I researched.
WARNING: Have kleenex handy.
