Thoughts on Hand Transplants 

I’m currently sitting at the Mazda dealership while my car gets it’s 5,000 mile service. It’s crazy that I’ve already driven that many miles, but it adds up quickly when you’re zoom-zooming around New England. 


My new ride…. zoom zoom!

The dealer just walked in after parking that red Miata and said “You could be driving that! You’d fit right in it!” Hah. Maybe next time, buddy.  

This afternoon I am heading up to Springfield, MA to pick up Kris, and then we are zoom-zooming all the way up to Grand Isle, VT.  


One thing I wanted to talk about today was the story of Zion Harvey’s bilateral hand transplant. If you follow my Facebook page, you may have seen the link I posted there the other day. 

Here is a longer version, which Dave and I watched last night: Zion’s Hand Transplant.  I highly recommend watching this one, even if you’ve already seen the shorter one. Grab some tissues. 


Zion with his new hands.

Oh my goodness. This story touched me on many levels. First of all, any time I see a kid having surgery, there is a part of me that is right there on the table with them. Second, the hospital involved is Children’s Hospital of Philadelphia, aka, CHOP, where I spent a bit (ok, a lot) of time when I was a kid. I was probably operated on in that same room. So it hits close to home for those reasons. 

All of that aside, the maturity level of this kid is insane. It’s hard to imagine having been through all that he has faced in his life already. His attitude and outlook is incredible. It’s so cool that he’s able to have this procedure, although as you’ll see, it is not without risks and a lifetime of maintenance. 

Also, can we just take a moment to consider the complexity of this surgery? As the doctor says in the video, the vessels and tendons and everything are smaller in children, so that adds a challenge, but look at how many tubes and cords (for lack of a better term) there are to attach! Plus getting the bones to line up and everything! Omg. And I can’t even imagine how painful the healing process must be. Seriously. 

Of course I also think about the child that the hands came from. What happened? How did his/her parents decide to donate? Will they see this story and know that these hands belonged to their child? And what will it be like for Zion to grow up looking at hands that once belonged to someone else? 

I was initially made aware of this story when a friend with EEC posted this on her page and mentioned that she would be interested in having a hand transplant. 

At first I was surprised that she would want such a thing, but then she reminded me that she does not have any thumbs. Still, it seems like an incredibly intense procedure to go through if you can manage without. I mean, you have to take anti-rejection drugs for the rest of your life, which can cause a whole bunch of other problems. 

I consider myself one of the lucky ones as far as ectrodactyly goes. I might not have 5 fingers on each hand, but the fingers I do have work well and I haven’t needed any surgery on my hands at all. I’ll likely never be a hand model, or a thumb wrestling champion, but I am definitely not at hand transplant level either. I can only imagine how tough a decision it would be to make, though obviously if you do not have hands or the hands you have don’t function properly, then perhaps it makes the decision easier. 

That’s my opinion for now. I’d be interested to hear from others. Would you have a hand transplant if you could?

Throwback Thursday – Autobiography Part 2

Last week I began typing up the autobiography I wrote for my 11th grade developmental psychology class. If you’d like to start at the beginning, check that post out first. This is part 2 of 3.


In first grade I had an awesome teacher named Mrs. Bush. She was the best teacher I’ve ever had. As soon as we could read and write, she had us writing our own stories and reading things not only to learn, but to have fun. She taught us words like amphibian, camouflage, reptile, and azure. she began each day with a letter on the board for us to copy into our notebooks and fill out the blanks. We liked her so much, and she liked us so much, that she decided to teach all of us again in second grade. In second grade she taught us sign language, we built a mouse house, learned about the Amish, barn owls and England. We even put on a puppet show for our parents on Open House night. I think those two years were the best of all my years in school. That year the school district redrew the district lines and as it turned out, my house was closer to another elementary school, so the next year I had to transfer to Longstreth Elementary. Third grade was a big adjustment. I had a hard time making new friends, but I survived.

In November 1988, my brother John was born. I had my first kiss around that time too. It was at a bible class which was being hosted at another family’s house. My friend Tim and I were playing together in his room while everyone else was downstairs. I was just innocently playing and talking to him when he grabbed me and kissed me right on the lips. I was so happy! I remember we used to hold hands together and I truly believed we’d be together forever (at the time I was only about 9 years old.)

The summer of 1989, Dad built us a big playhouse in the backyard. It had two ‘houses’, one for me and one for Kris. My house was on top and it had a wobbly bridge across to another platform with a sliding board. Kris’s house was under the slide platform and under my house was another open platform to climb on. That summer we played constantly, pretending to be Swiss Family Robinson in the playhouse, mermaids in the swimming pool and Indians in the woods.

In August of 1989, I had surgery on my ear to remove a benign tumor. It was only supposed to be an outpatient procedure but when I woke up, I was told that the doctor had found a bigger tumor than expected. It had intertwined itself around everything in my ear and the doctor decided to remove everything in my ear. Since then I have been deaf in that ear. At the time, I wasn’t too upset, probably because I was still groggy from the anesthesia. My parents were really upset though. I was supposed to have been well enough to go back to school with everyone else, but when the doctor took off my bandages he discovered that the incision behind my ear had become infected and hadn’t healed. I remember my mom almost fainted and I started crying because blood was running down my neck and the doctor was saying “This isn’t supposed to be happening!” So, in order for it to heal, the wound had to be kept open and an antibacterial ointment used on it every day. Dad was the only one who could change my bandage because mom couldn’t bear looking into it. I hated to have the ointment put on because it was very uncomfortable. About a week or so later, I was back in the operating room to have my ear sewed up again. I was glad when that finally healed. I ended up missing the first week of school because I was still recovering.

I was well enough to go to Disney world in October. I remember that trip well. it was really exciting for all of us because we’d saved the money for a long time to go on that trip. Fourth grade was a lot better than third grade. I had a lot more friends, but I hated most of my classes except art, which was my favorite.

In the summer of 1990, I had to I had to go in the hospital for an intravenous treatment because the tumor was growing in my ear again. We had switched doctors since the ear operation, and my new doctor believed that the IV treatment would be much more successful than another operation. I was glad of that, but 10 days in the hospital, however exciting it may seem gets really boring after the first day. I watched a lot of T.V. and I was homesick and dying to get out of there. I remember talking to Mom on the phone and begging her to come and take me home. She came to visit every day, but I wanted her to stay with me the whole time. I did have a lot of visitors though. Gram came a couple of times and brought magazines and food for me. The rest of that summer was fun though. Chrissy and I played in the woods, building forts and pretending to be Indians and fair maidens and everything else we could possibly imagine.

Fifth grade was a great year. I had great teachers and good friends. We went on a class trip to the Poconos for three days and two nights, we had a Greek Festival and we wrote a book together as a class. In February 1991, I missed about a week of school for surgery on my mouth. I had to have a bone graft to close up the gaps in my gums on either side of my two front teeth. I was so scared of that operation. I was convinced that I was going to die. I think it was because they were going to use bone from my hip to do the graft. I thought I would have a permanent limp, because I didn’t understand that the bone would be taken from the outer part of my hip. As I lay on the operating table slowly breathing in the anesthesia I kept repeating the Lord’s Prayer over and over in my head and as I slowly began losing consciousness I begged God to be with me and keep me alive. I was so afraid. It’s a horrible feeling, as you lose consciousness to know that you are no longer in control the doctors and nurses had total control over me and that freaks me out.

Fifth grade was my last year in the Elementary school. My friend Marie moved to Alabama right after school let out and Chrissy had moved in April, so I really didn’t have many friends close by to spend my summer with, but I enjoyed it anyway. I read a lot, rode my bike everywhere and swam in the pool. I got together with Joanna a couple of times and went to the beach with Gram.

—To be continued—

Editor’s note: When I wrote this, I had a very childlike understanding of what had happened in my ear. I refer to it all as a tumor, but it was more than that. I wrote about this in more detail in my post about my early experience with cholesteatoma.

Exploring Ectrodactyly with EEC Chick

Fun times in our pool!

Check out my crazy toe!

As the name implies, ectrodactyly is a prominent feature of EEC. Ectrodactyly just means missing fingers (or toes). If you ask me about it, I’ll say that I don’t think about ectrodactyly much and that it really hasn’t been that big of a deal in my life. Which in some ways is true. It has not caused me much physical discomfort, and in general I have not let it affect my self-confidence or social life. I had no difficulty learning to walk, tie my shoes, write, draw, play the piano, sculpt clay, or even type. Ectrodactyly never holds me back! Except that at times, my perception of it does hold me back. I have never had a professional mani/pedi because I don’t want a stranger touching (or even looking at) my feet. I’ve never found a pair of high heels I can walk in without agony. In fact, most ‘cute’ shoes are uncomfortable for me. I’m still timid when it comes to baring my feet in public, though I’m working on that one.

I just walked down these stairs with two different sized feet... no big deal.

I just walked down these stairs with two different sized feet… no big deal.

I was lucky because my ectrodactyly did not limit the function of my hands or feet. I only needed to have surgery on one foot, and that was because the “big toe” stuck out so far that wearing a shoe was a challenge. The surgeries were done when I was really young, before I started school. I have tons of pictures of little me walking around the house with a huge boot on my foot. It’s amazing I was able to walk without tripping, when I can barely do that now without a cast on my foot. . . .

The first toe surgery didn’t work, so we went to another doctor and I had a second surgery. The doctor was really nice and the day of my surgery he actually came into the pre-op waiting room and picked me up and carried me into the operating room. It was much more comforting than being wheeled in on a gurney. That may also have been the time that they offered me different fruity scents for anesthesia. Regrettably, I chose banana.

The procedure was simply to cut a wedge of bone out of the toe and fold the toe inward a bit. They stuck a surgical steel pin through the tip of the toe to hold it in place while it healed. I still have the pins from both surgeries – I’ll post pictures of them in a later post devoted to the various medical paraphernalia I have collected through the years.

I seem to have misplaced my bubble wand.

I seem to have misplaced my bubble wand.

I’m sure I was aware that my hands and feet were different from a young age. I would look at my mom’s long, graceful fingers and wonder if mine would ever look that way. I knew I was different, but everybody was different in some way or another. My hands and feet weren’t a big deal, especially since my cleft lip and palate issues required much more attention.

The first time I remember becoming acutely aware of my hand difference was when I started school. There were probably instances before that where someone might have noticed my hands or feet and asked about them, but nothing sticks out in my memory. What I vividly recall is walking down the hallway at school and seeing kids pointing and staring. It was the first time I saw anyone look at me with fear in their eyes. It hurt to be called names and to be feared by other kids when all I wanted to do was make friends and learn.

Of course, not everyone treated me differently. Some kids were able to look past my outward appearances and were friendly to me right away. Before long, kids got used to me and stopped noticing my hands at all. My feet were always covered by socks and shoes, and so it was easy to forget about them.

Hey kids! Are ya freaked out yet?

Hey kids! Are ya freaked out yet?

One of my favorite places to go as a kid was Sesame Place. I loved the water slides most of all. One year, my cousin Karen took me and my friend Joanna there for my 9th birthday. It was a Saturday, and the park was more crowded than usual. The lines for the water slides were long, and looped back and forth on each other. Karen waited while Joanna and I went on the slides. As we inched our way up the stairs in line, there was a group of boys right in front of us. They were being typical boys, talking roughly and pushing each other around. After a few minutes one of them noticed my feet. “Eww!” He shrieked, “Alien feet!” My heart lurched. The other boys looked and made exclamations of disgust and laughed. They lost interest after that, but this kid wouldn’t give it up.

The line moved agonizingly slow, giving him plenty of time to torment me. In hindsight, I don’t know why none of the other people in line told him to shut up, or why I didn’t use one of my alien feet to kick him in the groin. All I remember is the feeling of shame, that I was gross and scary and shouldn’t be showing my feet in public. When we finally got to the top, I had to get on the slide right behind him. I was so flustered that I didn’t wait for the attendant to tell me to go ahead. I just went, and the cruel forces of gravity pulled me right up behind him. “Eww!” he shrieked again, as my feet brushed up against his back. “Don’t touch me with those monster feet!”  he yelled. Miserably, I grabbed at the slippery sides of the slide, trying to slow myself down somehow. I bent my legs to try to keep my feet from touching him, but our fate was sealed and we slid down together, hating every second of it.


Weeee! (This picture is from a happier day.)

Once I escaped from that nightmare and met up with Karen again, she asked me who the kid was that I’d been talking to. Did I know him from school? I feigned ignorance. I didn’t feel like going on any more slides after that. I dried off and put my shoes back on. We had lunch in the park and then we went home.

I didn’t talk about that moment with anyone after that, but from then on I was hyper vigilant about who I saw my feet. When we went to the beach, I would wiggle my toes down into the sand to shield them from the eyes of strangers. I was embarrassed about the footprints I left in the wet sand as I walked down to the water. I dreaded occasions where I’d have to expose my feet at school. I eventually learned that no one was going to make a scene like the kid at Sesame Place did, but I still felt ashamed and did not want to give people any more reason to think I was creepy.

As I grew up, as a teenager and a young 20-something, I only let a select few see me barefoot. I had such anxiety about my feet that I always kept them covered in public. When I was 28, I decided that I wanted to take swimming lessons again. I’d always loved to swim and thought it would be a great way to get exercise. So I took a class at the YMCA. I wore Crocs in the locker room and on the pool deck, slipping them off for only the time it took to get from the bench to the pool. No one ever commented on my feet, and most likely not that many people even noticed. It helped me build a little confidence, but I wasn’t about to parade around town in a pair of sandals.

It wasn’t until I went to the NFED Conference in 2011 that I really showed my feet to anyone else. I was inspired by the kids I saw running around barefoot or in sandals. Kids whose feet were just like my own. I remembered how good it felt to wear sandals and to feel the breeze on my feet. I went home and bought a pair of flip-flops. I was still shy about showing my feet, so I only wore them around the house and around people I was comfortable with. But it was a start. The next year I brought the flip-flops to the conference and I wore them the whole time. Of course, as soon as the conference was over and I had to return to the “real world”, I covered up my feet again.

Throwing EEC gang signs with my homeboys.

Throwing EEC gang signs with my homeboys.

Each summer I grow a little braver. Last year my company had it’s summer picnic at an amusement/water park (not Sesame Place). I decided to go in the water park. It was the first time in 20 years that I showed my feet (and my thighs) in a really public place. Most people didn’t even notice. In fact, most people were far from perfection in their bathing suits.

It might seem silly that I could be so affected by that kid at Sesame Place. Of course, he wasn’t the only kid who ever commented on my digits (or lack thereof). Maybe he was the straw that broke the camel’s back. Despite all the physical pain I’ve been through with my oral/maxillofacial/dental surgeries and my ear surgeries, it seems like the hardest thing for me in this life is accepting that I look different, and that people notice. It is something I have battled as long as I can remember – this feeling of not looking the way I’d really like to. I have come a long way in terms of accepting my looks, but I still have a long way to go.

I am always grateful that my hands and feet work so well. Not everyone with ectrodactyly is so lucky. I have enjoyed compliments on my drawing and penmanship skills. I can walk for miles and hike mountains without my feet giving out. I am fortunate, I know. Feelings of shame about one’s appearance are incredibly powerful and difficult to break away from. I know I am not alone in struggling with this. I have had friends who struggle with body image for other reasons, and so I know it is a common struggle, especially for women.

So there it is. My experience with ectrodactyly. I forgot to write about being called Ninja Turtle hands or Three Fingered Monster, but the moral is the same. Pick on someone about their looks and they get a complex about it. Don’t do it. Don’t make fun of fat people, or people with crooked faces or disfigurements. They didn’t ask to look that way. Look past whatever outward flaws a person has. You might just find that they are worth getting to know.

Full Speed Ahead

Surgery is looming at end of this week like an iceberg on the horizon. (Dramatic, right?)

Scheduling surgery as an adult is a weird thing for me. I had so many surgeries as a kid that I just grew accustomed to being told when the next one was and steeling myself for the inevitable. But as an adult, I’m the one in the driver’s seat. I’m the one who looked at the calendar and said “Friday, November 22nd would work for me! Sign me up!”

I don’t know if anyone ever really wants to have surgery. Even if you know that the results of the surgery will make your life better, you still have to get over the hump that is the surgery itself. Even if you’ve had 20+ surgeries before, there is still a sense of dread at the prospect of putting on a skimpy hospital gown and allowing yourself to be knocked unconscious so a roomful of strangers can poke, prod and cut you open. And I’m pretty sure they peek under your hospital gown and have a giggle while you’re unaware.

The upcoming surgery isn’t a HUGE deal, really. It is an outpatient procedure, which means I don’t have to stay in the hospital overnight. The procedure in having is a revised radical mastoidectomy.


I had the same surgery done last year but recently learned that there is still some disease in the ear which needs to be removed. There two things about this type of surgery that make me nervous: One, the behind the ear incision. If you’ll recall in my last post, I remember all too well how it felt when that got infected and failed to heal properly. Fortunately, last year it healed fine, so I know it can be done. The second worry (this should probably my rank higher than the first worry) is that the facial nerve runs through the surgical site. There is a risk that it could be damaged and leave me looking like a stroke victim. I’ll admit, I am a little vain about my looks. I’ve learned to love my appearance and can see the beauty in my imperfections. But I really do not want to add facial paralysis to my list of issues. Really. Fortunately they use a nerve monitor, which somehow attaches to my face and can sense if the nerve is being damaged. I’m not sure how it works, only that my face was sore from it and I had a bruise for a few days afterward.

Last year I was so elated to be through the surgery that I took “drugged up” selfies and posted one on Facebook. I’ve made a mental note not to repeat that this year.

Post surgical selfie. Not my best work.

Check out my sweet bandage and facial bruise.

Despite having gone through this last year, I am not exactly eager to do it all again but I am going to because it’s the right choice.

This week ahead is very busy, but I expect that even if I fail to post anything else this week, I will have plenty of time to catch up next week. I have a graphically detailed ear-suctioning post in the works which I’m sure you’re all looking forward to. Stay tuned!

Deaf as a post – Part 1

Trying to be enthused about starting 4th grade late.

Trying to be enthused about starting 4th grade late.

For about a week now, I’ve been 85% deaf (as opposed to my usual 50%). I seem to have acquired an infection or a swelling or some thing which has caused my good ear to feel clogged and useless. I’ve been walking around feeling like I’ve just jumped into a swimming pool and the world is muffled.  

My nerves are a little frazzled lately, in part due to this ear thing. If you’ve ever gotten water in your ears, or had your ears pop in an airplane or something, you know how annoying it is when they don’t feel (and hear) right. You never think about how often people speak in hushed tones at work (or should I say gossip?) until you can’t hear them. Sitting at my desk and watching a co-worker mouthing the latest gripes and having no idea what she’s saying makes for some awkward moments. Worse yet is not being able to clearly hear my boss giving direction for a project. 

Ok, who am I kidding, this happens even when my good ear IS working.

So you’re probably wondering what the problem is. Well, ear problems go hand in hand with cleft lip and palate, thanks to improper Eustachian tube function. Since infancy I had frequent ear infections. Every time I’d have surgery on my mouth, they would pop some tubes in my ears in an attempt to alleviate the ear issues. The tubes would always work their way out a short time later and the infections would return. Over time, my ear drums became heavily scarred from all the tubes and all the infections and subsequent ear drum ruptures.

When I was 9 years old, I had surgery on my left ear. I had been suffering from a chronic ear infection for years before that. I’m sure there was pain and hearing difficulty during those years but all I remember was the frequent dosing of antibiotics, or “bubble-gum medicine” as we called it, because it was bright pink and candy-flavored. So I was 9 years old and I had this surgery which was supposed to be an outpatient procedure. I think it was an exploratory surgery because the doctor we were going to couldn’t figure out what my problem was. So when they went in, they discovered that my inner ear was full of cholesteatoma, which as I was made to understand at the time, is basically a tumor made of skin. They opened up my ear from behind and removed all the cholesteatoma, along with bone and parts of my inner ear.

I woke up from the surgery with an incredibly sore neck. My head was wrapped in what felt like an enormous, heavy bandage. My parents were really upset and they told me then that the hearing in my left ear was gone. I don’t recall being sad about it. Considering the amount of cholesteatoma and the extent of the infection I had at the time, I probably hadn’t been able to hear well from that ear anyway.

A few days later we returned to the doctor so he could remove the bandage and take a look at my ear. I sat on my mom’s lap as he began unwrapping. As he pulled away the last bit of gauze, a gush of smelly fluid came out from behind my ear. Mom exclaimed concerns about fainting and the doctor exclaimed too – something along the lines of “Oh crap, that’s not good.” The incision had become infected. Back on antibiotics I went, and home I went with a hole in my head. It had to remain open until the infection cleared up.

Part of the infection-healing process was that my dad had to apply antibiotic ointment to the incision every day. My mom couldn’t bring herself to do it (and I don’t blame her). It was a hideous experience. When he would get home from work in the late afternoons, I would lie face down on the bed while he took a Q-tip and gently applied the antibiotics to the back of my ear. I hated every second of it and just thinking about it now makes me queasy.

Ultimately that infection healed and the wound was closed up. I missed the first week of 4th grade and, as you can see in the photo above, once I did return to school I still had the cotton ball and ointment going on for a while. Plus I was exhausted.

Sadly, that was not the end of the ear problems. The following summer I had to spend a week in the hospital for an intravenous antibiotic treatment to clear up further ear infection. By then we’d switched to another ear doctor because my parents were horrified that the previous one had missed the signs of cholesteatoma until it was nearly too late. For several years I had regular visits to the ENT to have my ear “suctioned”, which as you can imagine is not the most fun process. After a while, it was determined that my ear was okay and I could stop using ear drops and eventually I stopped visiting the ENT.

For the most part my ears were okay throughout my teens and 20’s. The occasional ear infection or wax buildup in my “good” ear would sent me to a doctor for treatment. It wasn’t until my 30’s that I finally decided to find a good ear doctor and find out what was going on in both ears.

Stay tuned for Part 2 – my adventures in ENT issues as an adult.

Dear Diary, Thanks for keeping all my secrets. Love, Heather


When I was 10 years old I was given this little pink diary for Christmas. I had no idea then just how significant a role this little book (and the dozens more that would follow) would play in my life. As a 10-year-old, I wasn’t even really sure how to keep a diary. All the books I’d read about diaries usually involved extreme situations and I was no Anne Frank. Often times I would just write “It’s late, I gotta go!” as I climbed in bed for the night. But it got me into the habit of writing and before long, I was spilling my guts onto the pages. Through the years I relied on my journal as a place where I could vent my frustrations, share my ideas and express myself without worrying about anyone else’s reaction.


My journals are one of my treasured possessions because they are like little time-machines that transport me to different moments in my life. Some of the things I’ve written bring back happy memories, and other things fill me with angst. Sometimes it even seems like I’m reading the thoughts of a stranger. It makes me realize how much people can change as they go through life, and how various experiences can alter your attitude or opinion about things.

I plan on sharing some excerpts from my journals because I think they can give a more accurate picture of how I was feeling or managing things at the time. Like this one, where I was kinda freaking out about my upcoming bone graft surgery.

Tuesday, January 29th 1991

A week from today I will be in the hospital. By now (10:07pm) I should be out of the operation room maby even out of pain! I could only dream! Im sort of looking forward to it but I’m worried about the pain mostly. Do you think I’m crazy or not because I am looking forward to it?  Mommy bought a bunch of valentines decorations for me to make while recovering. I hope I will be on the seventh floor with the older kids but on the sixth floor I’ll only have to stay 2 days. If I go on the 7th floor I’ll have to stay longer. I might think about staying on the 7th floor for 2 days or more but I am hoping to come home early so I will get to feel better with my family.

I read this now and find it sort of funny how I was obsessing over which floor I was going to be on. It wasn’t like I had a choice. As if they’d wake me up after the operation and say “Hey, you want to be on the 6th floor with the babies or the 7th floor with the cool kids?” According to my diary, I got to come home after 2 days. I didn’t write anything about what floor I was on (it’s unlikely I was even aware at the time anyway). Because my mom got me supplies (paper doilies, red and pink paper, stickers and metallic heart confetti, to be specific) to make Valentines while I rested, I’ve since associated Valentine’s day with that sluggish post-surgery recovery feeling. How romantic.

I’ll leave you with a more typical diary entry from my 11-year-old self: