"What is being done medically for your kids with dwarfism."
Let's answer that question first -
NOT MUCH.
They are super healthy,
They are like you and I,
They are just short.
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We often get asked what adopting a child with dwarfism entails.
FIRST and foremost - you have to know China did NOT think children with dwarfism were adoptable until recent years. Many orphanages still find this an unadoptable special need. PLEASE keep this in the back of your mind when reading over files.
In our experience after reviewing MANY files for kids with dwarfism, we find the healthiest kids with dwarfism listed. There will always be the exception but for the most part they are the healthiest kids, with the straightest legs in the dwarf community.
We have adopted 3 with achondroplasia (what you typically think of when you think of dwarfism). Since achondroplasia makes up 80% of people with dwarfism that is what I am going to talk about here. If you are looking at a child that we suspect has another form of dwarfism, most of this will NOT apply. However, I am happy to answer specific questions as our youngest bio son has a rare form of dwarfism that makes him proportionate just miniature.
Our kids were were 2.5 yrs, 4.5 yrs, and 11 when they came home.
We have had them 2 yrs, 3 yrs, and 10 months.
For many parts of China, they don't seem to have a word for dwarfism and so these kids are listed with everything from their x-ray findings (Tao) to made up words meaning small or delayed. None of our kids had spinal issues noted in their files, nor did they have treated hydrocephalus (many reports say they have hydrocephalus BUT China was referring to their larger than normal head circumference - this is a normal variant for dwarfism). I have seen a couple of files where the child had a shunt placed as a baby or toddler and you would also need to make sure you are comfortable with that special need.
MANY files will describe developmental delay, low IQ etc. Children with achondroplasia have their own developmental checklist and it is perfectly normal for a 2 year old NOT to be walking yet. Think a larger head, normal size torso and hypotonia (low tone) balanced on 2 short legs. From my experience once they start walking the rest is a piece of cake.
We see many children listed for international adoption as below our normal height and weight charts. However, a child with dwarfism is far below any chart lines period. In fact, they have their own growth charts. To give you an example of size, Tao our almost 5 year old wears 9-12 month pants and 2T tops. He is the strongest, most well balanced child I have ever met - he just is tiny. Brahm (our bio) weighs 34lbs at 8 years old.
Please know that many children with dwarfism are not allowed into schools in China, or the directors don't find value enough in them to send them to school. This has nothing to do with their IQ. As far as IQ, our children with dwarfism are average to very high IQ. There understanding of social situations far exceeds any of our other children and most of their peers.
Bringing Home
Once you land in the US with your child you will already have an idea of your child's size and what they can and can't reach.
Children with achondroplasia tend to have very wide feet - so we bring crocs to China to get them and go shoe shopping once we are home. Don't expect them to come with proper shoes. Dawson wears a size 13 wide and came to us with size 4 boots to accommodate the width. Unfortunately he is very duck footed from learning to walk with improper fitting shoes.
I would say the same for clothes. We bring a variety of sizes and safety pins to China. Children with achondroplasia tend to have smaller waists but larger bottoms, short arms and legs but normal size torso's. In the winter we have found pants with elastic or ribbing around the ankles really helps. Girls are easy as their dress/swingtop and bike shorts work best. However, there seems to be a huge difference on brands that fit their little bodies well. Although not ideal, it does work so much better to shop for clothes once they are home.
Medical
You will hopefully have an appointment with a pediatrician who probably has never seen a child with dwarfism, and is happy to at least consult with one of the specialists. Exams you will want:
Hearing,
Sleep study if child snores,
orthopedist if you aren't seeing one of the specialists above.
anxillary medical to address issues in the child's file.
Possible complications -
I will try to list ANY of the possible things that you might face with a child with dwarfism. Most are extremely rare and we have only seen 1 or 2 children who have come home needing any of these procedures.
Foramen Magnum surgery - (I posted extensively as our daughter had this performed.)
8 plate leg straightening surgery (I don't know any adopted children who have needed this)
Orthodontia -
Loss of hearing - due to untreated ear infections
Sleep Apnea - may require tonsils removed or machine during sleep
Kyphosis - bracing or surgery for curvature of back
Adaptations
We started all our kids with dwarfism at a charter school this year (they have mandarin immersion). It has been so nice because they allowed us to provide steps tools and alter the desks for our kids.
Our minivan had to have a running board put on it to help Fei get in the car easier.
All the dining chairs and barstools are intentionally bought with bars so they can climb up into the chair.
We have stools of varying height for our kids throughout the house. BUT we also walk them through thinking how to tackle their environment. For example - Fei is now 7, and we were at the orthodontist's satellite office yesterday to reapply her palate expander. They told her to go rinse out her mouth. I could have picked her up but instead walked her through thinking where to spit the cup of water when she was done - trash can, clean sink, larger cup etc.
Our kids do have someone help them get items from the salad bar during lunch - however, we do encourage their independence as much as possible including carrying their tray etc.
Trip Trapp chairs are a good chair for the end of the lunch table - our kids in particular think it makes them stand out even more and have refused this accommodation.
Our kids do have someone help them get items from the salad bar during lunch - however, we do encourage their independence as much as possible including carrying their tray etc.
Trip Trapp chairs are a good chair for the end of the lunch table - our kids in particular think it makes them stand out even more and have refused this accommodation.
Social
The social situation is the #1 thing we deal with day to day. We call it the puppy factor. People notice our kids, they are fascinated with them. It brings a LOT of attention to our family. For the most part people are kind, just curious. In the early elementary years it seems we focus a lot on educating the other kids etc. With the kids new school, I did a presentation to the entire school about same and difference, and answered questions about dwarfism. We brought in their medals, and pictures of them skiing etc.
In preschool, we educate a lot because they equate little with baby. Nothing like picking up your sweet little guy from Sunday school and he is bawling because someone called him a baby.
However, as our kids get older we are seeing a very interesting phenomena. They are super popular. Not ... we feel sorry for you so we will hang around you, but your pretty cool. We see friends reaching for items for one of our littles without a second thought - and really that's pretty awesome.
When we leave our community, we do get comments. For the most part we educate and the older kids are starting to take the lead.
We work very hard on 'acting your age so people will treat you like you act not how you look.' We don't dress Tao in mommy loves me shirts even though he wears 12-18m clothes. I do get on middle school kids who talk to Dawson like a baby when he is almost their age. This is by far where I spend my most time on their special need. **Most importantly we teach the other kids NOT to ever pick up our kids with dwarfism. There are kids who have been dropped and suffered spinal injuries.
The best advice I have ever heard from a little person is "You WILL make a lasting first impression, it's up to you if it's good or bad."
The Little People of America (LPA) is the national organization which offers grants to children with dwarfism, information, education, and get togethers. Their is a national conference the beginning of July every year. Not only do little people from all over the US get together, but DAAA has sporting competitions during the same time. This is such a wonderful time for our kids to be with like peers. In addition,there are state and regional meetings throughout the year.
Best part - LPA adoption offers grants for children with dwarfism regardless of which agency is used.
Specific real life information
Dawson
Dawson is our newest home and our oldest adopted. We brought him home in April 2014 and knew we had an appt with the dwarf specialist the end of June. Aside from a quick look over for general health by the pediatrician we put everything on hold so he could try out the mandarin school here, and finish out the year.
We got Dawson's hearing checked,
He saw an ENT,
had a sleep study and ultimately had his tonsils and adenoids removed.
Although he is very duck footed the correction for this would be incredibly intensive for minimal results and we have been advised not to do anything (he has a rare trifecta of hips, ankles and knees causing the duckfootedness, but with proper fitting shoes he is getting better.)
We are contemplating speech as neither his mandarin nor his English are completely clear and we want him to have the best advantages as he gets older. (We thought for sure he had hearing problems, and some people with achondroplasia have a larger tongue which can affect speech, after having everything checked it was determined more due to spending 9 years in an orphanage.)
From here on out,
Yearly with specialist who will monitor his legs for bowing
Otherwise he is super healthy and aside from being pretty small even for a child with dwarfism, we don't anticipate any needs in the near future.
*He was older when abandoned and we are considering changing his age but wanted him to be home a year first.
Due to 9 years in an orphanage we have been working on core strength and endurance!
Feifei
This little one has been one of 3 home from China (that I know of) who have required the foramen magnum decompression surgery.
She had absolutely NO neurological symptoms and the only reason we found that her spinal cord was compressed was from the sleep study (she has obstructive AND central sleep apnea.) After which we had an MRI of her neck area which showed the compression at the base of her skull. She has also had a follow-up MRI to make sure the compression was alleviated after surgery.
Interestingly, her lungs are tiny - the dwarf specialist guessed correctly that the obstructive sleep apnea was a false positive due to the compression and lower lung capacity. He was correct and her follow up sleep study showed minimal obstructive apnea (basically meaning we did not have to put her through surgery again for her tonsils.)
Although she is super healthy, we are constantly vigilant with her activities and with our boys to make sure she does not damage her spine. She can not do tumbling activities, contact sports etc. We have found dance to be a great compromise for her, and as the only little girl it makes her special!
Besides yearly visits with a dwarf specialist we continue to monitor her legs to make sure they remain straight. (the 8 plate straightening surgery is common for teens with dwarfism but our kids have shockingly straight legs.)
Fei also has a significant underbite and flat mid face. We were advised by the dwarf specialist to start treatment now instead of the typical late elementary age. She has a palate expander and reverse pull headgear in hopes of preventing major jaw surgery in later years.
Kids with achondroplasia OFTEN require orthodontia (Dawson has a cross bite but his mouth looks pretty good. We take our kids in to our orthodontist every 6 months. He is willing to check them out free AND listen to the experts in dwarfism.)
Tao
So Tao was listed as having a heart issue - so we went to cardiology - they gave us a 3 year clear!
He also had his extra thumbs - so we went to a hand specialist and he had those removed about 6 mos home (they were not functional). At that time we determined his thumb on the left has minimal muscle, but decided that we would not do the tendon transfer like we did with Cav. (this is presumably a Chinese thing not dwarfism as he is the only know person with achondroplasia and extra thumbs.)
Because of Tao's extra thumbs, heart and short stature we did see a geneticist immediately. THere is another type of dwarfism that 50% die their first year and everyone thought he had it. They did run a genetic test and he tested positive for the FGFR3 gene (achondroplasia). Even now at 4, I am glad we had that test as he has long legs and is quite proportionate for someone with achon.
We have a pediatrician at home for normal childhood illnesses, and we see one of the specialists above once a year. The specialist is always a phone call or email away and is happy to consult with our Dr here if a question arises.
For our family, dwarfism has been an incredibly easy special need. Truly the most time consuming and difficult part is dealing with other people's ignorance. This is not particular to dwarfism though, this seems to be an issue for all visible special needs, and I dare say anyone who looks different in particular.
We try to keep track of children with dwarfism available for adoption - here
We try to keep track of children with dwarfism available for adoption - here
Thank you this was very informative!
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