More messages from other parents..

I love this message. It goes to show the diversity of the parents whose children face this condition. Whatever your religion or cultural background is, we can all relate to how it feels to love a child with physical challenges.

Hi, First when I saw my son coming out with such conditions.. I almost fented.. but couldn't act wild cse did not want shock my wife.. my son is having both hands and legs with three fingers and three toes with close left ear.. I was blaming my wife for watching aliens movies and ET.. but as a muslim, I had to accept that is a allah giving and creature. . Can't complain neither blame anybody.. just was praying for a good and healthy growth and brain.. now he is almost 3 years.. adam can walk can run lile a crazy and can grab things strangely but he can. Talking not yet start. . Im following and doing check up every mow and then.. please send me the FB page address.. mine is chalghoumi@gmail.com.. Waiting for your kind reply.. regards. Allah bless everyone


Thank you so much for sharing your story. I too believe that God (or Allah) is a loving and generous being. I too believe that he has a very divine and special purpose in sending our child to us with these physical challenges. A mother whose child has Down's syndrome once told me that God only sends special children to special people. I know that one of the reasons God (Allah) sends our children this way is to help us grow our faith in him. I cannot look into my son's happy and smiling face without thinking of God's love for him and us. I cannot watch my son do something new like climb stairs or pick something up with his two fingers, and not feel amazed in God's ability to help my child overcome his challenges. It gives me faith in God's plan for my son. God knows what he is doing, even if I don't.

You mentioned in your email that you had feelings of blame when you first discovered your child's condition. I think this has to be a natural and universal feeling for most parents of children with disabilities. In my dark moments, sometimes I blame myself for my son's limb deformities. I ask myself, did I do something wrong when I was pregnant? Did I not take the right vitamins? Did I expose myself to some toxin? Did I eat too much bacon in my first trimester? and so on. But then I think of my pregnancy with my first son. I was young during his pregnancy and I didn't do anything I was suppose to do. I didn't take any prenatal vitamins, I didn't eat right, I didn't exercise, and I rarely followed my doctor's instructions. That baby came out perfectly healthy with no problems. In my pregnancy with Brodie, I did everything right. I took the prenatals, I ate healthy and I followed my Doctor's instruction explicitly. Hell, I even did prenatal yoga. But that baby came out with birth defects.

I think the truth is that we really have only limited control over how our babies come to us. I've seen women strung out on street drugs have perfectly healthy children. I watch a show on TV where women don't even know they're pregnant (they smoke and drink alcohol and never see the doctor) and suddenly give birth to healthy babies on the bathroom floor or in a toilet. Yet two very healthy parents, with perfect genetic and family backgrounds, who take every precaution, still have babies with problems.

Reality is, having a baby is a lot like playing Russian Roulette. You get what you get and there are never any guarantees. This is one of the reasons why I think God has purpose and a plan to giving us our children this way. God chooses what kind of a child you have. So you can take all the prenatal vitamins in the world and eat vegetables until you throw up, it doesn't make that much of a difference because only God has true control over how your baby comes to you. You just have to have a little faith.

After all, we are all born with challenges in our lives. Some challenges are just a little bit more easier for others to see.

Emails....

I get emails and messages from parents all over the world who have children with similar conditions to my child. I love getting these messages, it is always nice to know you are not alone. Here is one example of a message I got and my response. I changed some of the info on the oringinal message to protect the other mom's privacy.


Hi, We don't know each other but I saw your son on the Ectrodactyly page on Facebook. My son was born with his leg almost the same as your sons. I was wondering if there's any advice you could give me since your currently going though the same thing I am? Thanks so much!!


My Response:

Hi! Thanks so much for writing me. It always helps to know that you are not alone in this situation. We are still waiting to have our baby's surgery, the first time we attempted it, it was canceled because he was wheezing at the pre-op appointment (he has asthma and he is prone to respiratory infections). But its amazing how mobile he is, even with his legs the way they are. He climbs on everything, he can even go up and down stairs! :-)

The best advice I can give you now is to shop around for your orthopedic surgeon. Don't be afraid to get a second opinion and even a third or forth opinion. Don't take their surgical plans at face value. You only get one shot to do this surgery so you really want to feel confident that its the right surgical plan for your child.

The first surgeon we saw took one look at our child, threw his hands in the air and backed out of the room while saying he needed to refer us to someone else because he on really deals with fractures. The second surgeon we saw was the head of the pediatric orthopedic unit at Phoenix childrens hospital. He was rude and condescending and didn't really do a good job answering our questions. Like you, this doctor told us that the knee on my sons right leg was unsalvageable and he would have to do an above the knee amputation. He also wanted to do surgery on Brodie's left leg to fuse the tibia and fibula together as they are not connected. We didn't choose him because we didn't feel comfortable with him, but we took his surgery plan at face value and assumed that this is what any surgeon would need to do for Brodie.

When we moved to omaha shortly after that, we saw our third surgeon who was the head of pediatric orthopedics for the omaha childrens hospital. This doctor referred us to a surgeon at shriner's hospital in minnesota named Dr. Krandall. Apparently this guy is a world class specialist in amputations for children and he felt that he would be the best choice for Brodie. This doctor at Shriners had a completely different surgical plan in mind, which really surprised me. He felt that he could save the knee on Brodies right leg and do a below-the-knee amputation instead. As you probably know, going below the knee can make a huge difference in their ability to walk and move later on. This doctor also felt that doing surgery on the right leg was unnecessary (less surgery, yeah!). What's important is that this new doctor was willing to take a different approach and at least try to save some functionality in that leg. Even if they end up having to go above the knee, at least we tried, you know?

I guess my point is, you only get one shot at this surgery so don't be afraid to shop around and find the doctor you feel the most comfortable with and that you feel has the best plan for your child. You are not going to hurt your doctor's feelings by getting another opinion. It might surprise you to see how different the plans of each surgeon are. This way you will know what all of your options are before you take such an important, life-changing step for your baby. I'm glad you wrote, I hope we can stay in touch. Our children's conditions are pretty rare, so its nice to find someone out there in the world who can relate. :-)

BTW and FYI: a resource list

Folks, I hope you understand that I was exaggerating earlier when I said there is no information about childhood amputations out there. The truth is that there are a few resources out there for parents with limb deficiencies and amputations. Here are some articles and links with some good information on the subject:

http://child-amputee.net/information/articles/for-families-of-children-with-amputations/
~ a good article on parenting children with limb differences

http://www.amputee-coalition.org/fact_sheets/help_child_understand.html
~ a list of children's books geared towards helping children cope with limb loss

http://limbdifferences.org/
~an online support group and resource center for parents of children with limb differences

http://child-amputee.net/
~ The international child amputee network

http://www.circleofmoms.com/moms-of-children-with-limb-differences.
~ a message board support group of moms with children who have limb differences

http://www.littlefins.org/page4.html
~ a list of resources

http://arewethereyetla5.blogspot.com/2009/11/raising-child-with-limb-difference.html
~ another blog

http://www.bornjustright.com/
~ a blog

If any one actually reads my blog and has the need, please feel free to comment if you have more resources. I will add more in as I find them.

There is no book titled "What to expect when your baby is expecting an amputation."

 

Well Brodie finally had his first real doctors appointment with an orthopedic surgeon. After looking at Brodie's x-rays this is what he told us.:
 

~ The two fingers on his right hand do not have the best movement. The thumb moves well but the pinky does not extend and is stuck in a curled up position. In addition,the pinky and thumb cannot touch each other. He will need to have hand surgery when he is a little older (age 4-5) to fix the tendons and give him a better range of motion. We will need to see another separate specialist for this and he may need more than one surgery on it.

~ It turns out that Brodie's "good" leg (the left one) is not that good after all. His fibula has extra bone growing off the top of it and it is not connected to the tibia . When Brodie is age 2-3, they will have to do another surgery on that leg. They will go in just below his left knee to remove the extra bone and fuse the fibula and tibula together.

~ They will need to amputate the lower foot part of the left leg.

~ On his right leg, they will need to amputate through the knee. The right thigh bone is malformed on the bottom end and has extra bone growing off of it. So when they amputate that lower leg, they will also have to open up the right thigh and remodel the femur, taking off the extra bone.

So this is a tentative schedule for the treatment and surgeries he will need.:

~ At six months old, they will need to do an MRI to take a closer look at the blood vessels, tendons, and bones. To take an MRI, one has to lay completely still for over an hour. Since they cannot make a baby lie still like that, they will have to put Brodie under general anesthesia for the test. This will happen in December or January.

~ At nine months old, they will do the first surgery, both of the amputations and the reshaping of that right thigh bone. He will be in the hospital for 2 to 3 days and will need up to 6 weeks for the incisions to heal completely. After that, he will be fitted for prosthetics and will need physical therapy 2-4 times a week.

~ At 2 to 3 years old, they will need to do the second surgery on the left leg, to repair the tibia and fibula. He will be in the hospital a couple of days for that and will probably need to wear a cast for a month or two.

~ At ages 4 to 5, he will begin having whatever surgeries he will need on that right hand. I'm not yet sure on the details of that surgery or how many surgeries for that he will need.

This was a lot of information to process. For some stupid reason (maybe denial) I thought Brodie would only need one surgery, the amputation, and we would be done with it. I was thrown off balance when the doctor started talking about other surgeries. It was a surprise to find out about these extra bone growths and the additional problems that he has with his "good" leg and his hand.

One thing I can definitely say is that I was not a big fan of that orthopedic surgeon.  It felt like every time we asked him a question, he would cut us off and give us very short, patronizing answers. He seemed very excited about the prospect of doing such unusual surgeries on our child, yet he seemed annoyed with us, like we were bothering him with our dumb questions.

 I'm sorry, but I really don't care how stupid or irritating our questions are.  This doctor wants to cut off my baby's legs. I want to be able to ask him anything I want to without any hesitation. If I ask him why the sky is blue, he better look at me with a straight face, like its the most intelligent thing he as ever heard, and give me a good answer. There's no other place or person that I can get this type of information from. Have you ever tried to google the words "baby" and "amputation" together? You don't get a lot of hits. There is no book entitled "what to expect when your baby is expecting an amputation".  So who else am I suppose to ask if not the doctor?

So my husband and I sat back and looked at our options. Then we made a really big decision. We decided to move cross-country to a big city where our family lives. We moved into a house that is within short walking distance of a major children's hospital. It was the best thing for Brodie. He needs to be close to specialized care and family support.

Now to start all over and find a new doctor. Yes, I am planning on being picky. There is an award-winning pediatric orthopedist up the block at the children's hospital. We are going to try him first. If I don't like him, I will take Brodie to Shriner's hospital, which is two hours away. I am not afraid to search for the right doctor. I know that the best doctor for Brodie is out there and I will not stop until I find him (or her).

Sometimes you just have to be a pushy bitch...

There are doctors and there are specialists. Then there are specialized specialists. For example, we have a general pediatrician.  I also know of several local orthopedists. But then there are pediatric orthopedic surgeons and thats who Brodie needs to see to get the right medical treatment for his condition.

There are less than a handful of pediatric orthopedic surgeons in this whole state. A handful of surgeons to treat more then a thousand children who need them. Children with club feet, or spinal problems, or bone fractures. So these surgeons are booked months in advance. It can be very hard to get appointment with one.

It's even harder when you live in a rural area. Most of these surgeons work in Phoenix, more than three hours away from where we live. When our baby can't tolerate sitting in a car seat for more than 5 minutes, Phoenix feels as far away as mars.

So our best option is a children's orthopedic clinic closer by in Flagstaff. This clinic involves the surgeon visiting Flagstaff maybe once a month. On that clinic day, the surgeon sees hundreds of children from all over northern Arizona and even parts of Utah and New Mexico. So this clinic is also booked months in advance.

All the children who come to this clinic are funneled through a single harried over-worked case worker.  For weeks I have been working with this case worker, wading my way through paperwork, insurance approvals, and referrals to try and get an appointment for one of these clinics.

I have been very polite and sweet to the people I have been trying to work with, bored receptionists and apathetic medical assistants, only to get brushed off and stalled. They tell me that the only possible appointments I can get with the specialist, or with the clinic, is in early December or late November, months away.

Meanwhile, Brodie's bad leg has been having terrible muscle spasms, where the whole leg gets rock hard and starts to shake. One time, when we were changing his diaper, his good leg actually popped out of joint and popped back in like nothing even happened.

So an appointment months away means months of Brodie of having pain. Months where he is losing valuable treatment and therapy time, when his bones are still malleable and soft, maybe even repairable. Months that could cost him mobility later on in his life.

Yet the very busy case worker and the over-worked medical assistants just keep on telling me to call them the next week because there is not much they can do.

Finally, I reached a point of overwhelming frustration, where I didnt  know where else to turn. I shared my feelings of helplessness with my husband. My husband can be very determined when he wants to be. "I am going to harass the hell out of these people until we get a better appointment." he tells me.

The next day my husband calls me at work. " I got appointments for this month with two different pediatric orthopedists." he says. One of which who has particular hard to get an appointment with. "How did you manage to get that?" I asked him.
"I wouldn't get off the phone with his medical assistant until she gave it too me. I am not above pleading and begging, or even getting a little tearful. I would have cried if I had needed to. Nobody wants to hear a grown man cry."

A good friend told me "Stop being nice about it and start getting loud. You are not in this to make new friends or have people think you are polite. You are in this to get medical treatment for your child.  Do not take no for an answer. Sometimes you just have to be a pushy bitch."

So I took my cue from my husband and my friend and I showed up at the office of the orthopedic clinic and asked to see the case worker. "Well he is really busy." the receptionist tells me.   "That's OK,I can wait."
Then I cornered him in the hallway. He tells me "Well maybe I might be able to get him an appointment with the clinic this coming Monday. But its a long shot."
That's when I got a little irate and I told him that I have no problem showing up at his office every day with a screaming baby until we get a better answer than that.
His eyes got wide and he asked me "you would actually do that?" 
You betcha. I will stalk you. I am not going to go away until you figure something out.
His attitude changed quickly. Finally he relented and said "I will definitely get you into the clinic on Monday."
Damn right you will.

Then I called the absentee medical assistant who never calls me back and has been lagging on pushing through the referrals Brodie needs to go see these doctors. I left her a tersely worded message that basically said 'hey, if you don't get this done today, I will call you non-stop and I will physically show up in your office until you do.'
An hour later she called me back. I'm not her favorite person now, but I don't care. She got the referrals done by the next day.

So folks, that's how Brodie got his appointments moved from two months away to this Monday instead. Sometimes to get it done you just have to be a pushy bitch.

Learning to expect the unexpected

I think pregnant women do a lot of daydreaming.  I know I did.  I wondered over what my new baby would look like.  Would he look like me or his daddy? What color would his eyes and his hair be?  I imagined his personality. Would he be funny and smart? Easygoing or high strung?  I have to confess, during my early pregnancy, I had really hoped for a girl. I pictured a little princess who I would adorn in pink tutus and ribbons and take to ballet class.  But when I found out the baby would be a boy, I wasn't too disappointed.  My husband and son had really hoped for another boy and they were very excited.

So what happens when you discover something that throws a kink into all of your baby plans and changes all of those daydreams?

It started for me one day at work when I was about 21 weeks pregnant.  I had been feeling a little sicker than normal all morning, when I began to feel contractions.  I had some pre-term labor in my first pregnancy, so I was really worried about it and I left work early to go get checked out.  My doctor was also worried and put me on bed rest while ordering a bunch of tests. One of those test was for my regular 20 week obstetric ultrasound.

 I went and had the ultrasound done and as far as I knew everything had gone just fine. At my next doctor's appointment, I even asked the doctor if the baby had looked healthy in the ultrasound.  "He looks good" the doctor told me, but he said he was still worried about the contractions and he wanted me to go see a perinatologist (a specialist in high risk pregnancies) down in Phoenix. Phoenix is three hours away from where we live, so my husband and I decided to take our son with us, stay at my mom's house down there for a few days, and make a little mini-vacation out of it.

A week later, down in Phoenix, my husband and I walked hand in hand into the perinatologist's office.  The medical tech came and got us from the waiting room and walked us into a dark ultrasound room with large monitors on the wall.  Surprised, I asked "oh you need to do an ultrasound of my cervix?".  "Well actually I need to do a full ultrasound of the baby." the tech told us.  I thought it was a little weird because I had just had a full ultrasound only a week ago.  But I figured that maybe the perinatologist was really detailed and wanted his own ultrasound done for his records.

The tech was taking forever.  I watched the clock and she spent over an hour scanning my belly.  At one point, she kept poking and pushing at one particular spot on my belly with the scanner for more than 15 minutes.  She even had me move into different positions.  "What are you trying to look at?" I asked her.  "Oh, I'm trying to get a better picture of the baby's right hand.", she said,  "he has tucked in behind his head and I can't get a good look at it."  I started to feel a slow sense of dread. Why was she putting so much time and effort into this ultrasound?  Didn't they already have one in their records? 

The tech finally stopped scanning my belly and told me she needed to do a vaginal ultrasound.  She left the room for a moment so I could undress from the waist down.  When she left, I turned to my husband and told him "I think something is wrong with the baby.".  He shook his head and gave me a look of exasperated disbelief. "No, of course not. Our doctor would have said something about it already."  He must be right, I thought, we would have heard something about it by now.  I am just being paranoid.

The tech came back in and started with the vaginal ultrasound. As many women out there know, vaginal ultrasounds are not comfortable.  They push a scanner that is shaped like a very large rod up into your most private spot.  This is what the tech was doing to me when the door to the room flew open and a strange man came rushing in.  Startled and embarrassed, as all of my junk was hanging out and facing the door, I jumped up in alarm.  The man quickly introduced himself as the perinatiologist and told me to lay back down and relax.

"Me and several of the other doctors were in the other room watching the ultrasound on our monitors." he says "And we are seeing some problems with the baby."  Let me just say that this is not something you want to hear come out of a doctor's mouth.  My heart dropped and I was filled with something like terror at what he would say next. I reached over to my husband and gripped his hand, squeezing it so hard my knuckles turned white. I asked the perinatologist "can I put my clothes back on and sit up before we talk about this?"  "No," he told me, "We still need to finish the ultrasound so go ahead and lay back while we talk." 

 He started to pull up fuzzy black and white pictures of my baby one by one, describing the limb deformities that they had seen.  First the baby's hand, then his right femur, then both of his feet.   Every time he pulled up a new picture to talk about a different problem, I would think 'oh God, there's more?'. There should be some sort of divine natural limit to how many things are wrong with a baby. Maybe one or two things, but that's it. That's all a parent or a child should ever have to face.

My husband was pale and his eyes were numb.  His face looked like stone.  I started sobbing, crying so hard I was almost hysterical. I managed to squeak out that my father had "lobster-claw" syndrome in a high pitched broken voice . In contrast, the perinatologist seemed almost excited to be diagnosing a fetus with such a rare condition as ectrodactyly. He talked and talked about it, asking us endless questions about my family's medical history, while we just sat there in stunned silence. Then he asked us if we had any questions for him, but at that point I couldn't even think or speak anymore. All I could do was cry.  "I'm sorry to have to be the one to give you this news. That you had to find this out from a stranger." he said before he left the room.  Yeah mister, me too.

After the perinatologist left, I  got dressed slowly, my sobs ringing out in the empty room. My husband stood in front of the monitors, looking up at all of those still little pictures of the baby. The gray light shined on his face and his expression was unreadable. We slowly drove back to my mom's house, the car unnaturally quiet. "I just want to go home." my husband told me as we pulled into the driveway and I agreed. So we packed our things right away and drove the three hour trip back home in a hurry, completely shell-shocked.

That is how I first heard the news that my baby would be severely physically handicapped. Out of the blue, half naked on a cold ultrasound table, a hundred miles away from home, and from a complete stranger.

Friends and family asked me "why didn't your doctor say something to you about it before you saw the perinatologist?"  I have to admit that for a few weeks I was furious with my OB doctor. A little warning would have been nice. At my next appointment with him, he asked me "how did the visit with the perinatologist go?"  "It was a fucking nightmare. That's how it went." I told him. Then I explained to him what the perinatologist had said about the baby's limb deformities. He looked totally surprised as he began flipping through his chart, scanning the notes in a rush. He acted just as shocked by the news as we were. I'm sorry, but I don't believe that he didn't know about it before then.  He is a sharp guy and a very thorough experienced doctor.  He must have wrote about it in his notes or said something to the perinatologist. Otherwise, how would the perinatologist have even known to look for it in the first place?

However, I can understand why he didn't say something about it to us first. As a nurse, I know that, in general, the medical community loathes giving bad news. We see the cat scan that says our patient is filled with cancer before the doctor does. We know that a patient is too sick to leave the hospital alive before that patient's family does. But it's not our job to say anything. The doctor or the specialist will have to tell them, because we definitely don't want to be the one to deliver that message. It's someone elses job, not ours  Maybe my doctor just didn't have the heart to tell us about our baby. It was probably easier not to say anything and let the perinatologist do it.

Well, that's it.  That's the story about how we learned to expect the unexpected. Coping with it, however, was a completely different matter.  Something  I will have to tell about in a different post.

What is Ectrodactyly? An overview.

When I first found out that my baby would be born with ectrodactyly, I was devastated and shocked.  But mostly, I was scared and and uncertain of the future.  A lot of questions wandered around my head.  How bad would my sons hands and feet turn out?  what would they look like?  How did he get this condition?  What would my son's physical limitations be?  What would the doctors be able to do for him? 

Well the way I dealt with this was to do as much research as possible.  Throughout my life, whenever I have faced a major ordeal, I have responded by learning as much as I could about the problem.  'Knowdledge is power' as they say, so I like to face my problems by being well informed.

It turns out that ectrodactyly is rare and kind of hard to find a lot of information on.  If you google "ectrodactyly", you are likely to see a lot of links to medical freak-show type websites, Bree Walker, and complicated scientific research papers on genetics. But I did the best I could and this is what information I could get from different resources.

Ectrodactyly is a Greek word that literally means abortion of a finger.  A different website states that ectrodactyly translates to "monstrous fingers".  The medical definition of ectrodactyly is the congenital loss of fingers or toes.  A more common (and recognizable) nick name for ectrodactyly is "lobster-claw syndrome", as hands or feet affected often take the shape of a claw.  Ectrodactyly has also been known as split-hand or split-foot malformation.  Another more specific scientific term for the condition are the initials 'EEC', which stands for ectrodactyly, ectodermal dysplasia, and facial cleft syndrome, naming three features associated with the condition.

The most typical presentation of ectrodactyly occurs in the hands and/or feet.  It involves the absence of the three middle digits, leaving a large cleft down the middle.  This gives the hand and/or foot a claw-like appearance.  



My son's right hand, which only has two fingers


Ectrodactyly can also occur in other variations.  Sometimes, only one or a couple of digits can be missing, with or without the cleft.  In other cases, hands and/or feet can actually have extra digits or webbing.  (By the way, the presence of an extra digit is known as syndactyly.)


 In the past, doctors have typically tried to repair and close the cleft in attempt to give the hand and/or foot a more normal appearance and a narrower shape.  Now, doctors are realizing that such surgeries might be unnecessary and can actually cause lost of functionality and movement.

For example, my son has two fingers, a thumb and a pinky.  The orthopedic surgeon told us that if they closed the cleft in the middle of his hand, he would lose the opposing thumb.  He would not be able to pick things up or grip things with that hand anymore.  Hand prosthetics are also unnecessary and would only get in the way.  We were told that children are very resilient and learn how to adapt, often times turning their "disability" into amazing abilities :-).

Both of my son's feet are affected by ectrodacyly.  He only has one toe on each foot and his feet are positioned upside down and backwards. Ectrodactyly can cause deformities in other bones, as well.  This is what happened with my baby, as his right femur (thigh bone) is misshapen too.  It is dramatically curved up, causing his knee to be rotated to the side.  The doctor told us that both of his feet will need to be amputated when he is six months old, so that he will be able to learn how to walk on prosthetics by the time he turns one.  At this point, we are not sure how his right femur will be treated. We are waiting for the specialist to tell us if it can be repaired surgically or if that whole leg will just need to be amputated.

my sons legs.  Notice how his right thigh bone is curved up.






Two boys with ectodermal dysplasia

Earlier, I mentioned that Ectrodactyly is sometimes called EEC syndrome for ectrodactyly, ectodermal dysplasia, and facial cleft syndrome.


 Ectodermal dysplasia is the absence of sweat glands causing a variety of skin and pigmentation problems.


 



Cleft palate (a split in the upper part of the lip and mouth) can also be associated with this condition.


A small percentage of people with ectrodactyly also have some level of hearing loss.  Interestingly, I have been partially deaf since birth.  All of my extremities are normal and deafness is my only symptom of ectrodactyly. My father has ectrodactyly and I didn't realize I had inherited it from him until my son was born with it.  I had always thought my hearing loss was a separate random condition.    But apparently, I do have it and I have a 50% chance of giving it to my offspring. 

This brings us to how ectrodactyly happens. It is a very rare condition and only 1 in a 100,000 children are born with it. It is usually a genetically inherited condition, as in one parent passes it down to their child.  However, ectrodactyly has occasionally been known to occur spontaneously even when neither parent has it. Most commonly though, it runs through the entire family and can be traced back for several generations.  It affects families of all ethnicity from all over world, including Asia, the UK, south America, Africa and the US.  Even some animals can have ectrodactyly.

 Well, ectrodactyly does run in my family.  My father has it and  several of his brothers and sisters (my aunts and uncles) have it, as well.  But neither their father or mother (my grandparents) have it and we are not sure of which generation started it.  I am the only child of my father and mother, his first wife. My only symptom of ectrodactyly is the deafness.  My father has ten other children with his second wife and the majority of them are affected to varying degrees.  Most of my half-brothers have it in their feet and several of my half-siblings have hearing loss. One of my brothers was actually affected in the same way as my son and he also had to have both of his legs amputated.

So there you have it. A little information on ectrodacyly and how my little miracle is affected by it.