If you are reading this (first post)

If you are reading this chances are you like me have a child who has been diagnosed with Fibular Hemimelia.  It is a mouthful isn’t it?  When my son Nicholas was born almost 6 years ago I would have to spell it out for people.  Now he tells them himself and thankfully they never ask him to spell it. Maybe repeat, but never spell.  Nicholas has done a lot of explaining lately because his leg is in an external fixator being lengthened for the 2nd time.  If you look limb lengthening and external fixators up on the net you are likely to read some distressing things.   Nicholas could disprove all of it.  My son could be the poster boy for limb lengthening.  He climbs rock walls with his fixator on, swims, hops, dances and plays all day. He takes no pain medication. Simply put, he lives his life and he lives well.

Every two weeks we go to Baltimore to the International Center for Limb Lengthening to get x-rays and see Dr. Standard.  Nicholas loves him and I am not sure what he likes better seeing Dr. Standard or visiting the cafeteria.  Ok the cafeteria probably wins but I look forward to hearing how well my boy is doing and seeing the new bone growing within the rings, wires and pins that make up his frame.  His checkups thankfully have been joyful days.

I wish I knew 6 years ago when I was a scared new mom that Nicholas really would be ok.  We did not know until he was born that he had a limb defect. I consider this a blessing because I had an easy pregnancy. Had I known I would have been so stressed and scared.  Having him was amazing.  Not amazing in the way they portray birth on TV, certainly not pain free and not at all fast. What amazed me was the sight of him.  I know I had never seen a more beautiful face.  I know many moms say this, but really my son was gorgeous.  Not squishy, just beautiful.  Right after being born he lifted up his head and looked up at this father.  If you know anything about newborn’s then you know he should not have been able to do that. While they were checking his stats and cleaning him up I realized something was going on.  Steven told me there was something wrong with his foot. Everyone was really calm so I was too.  I delivered him with midwives and they were the best.  The first thing they told me was that I did not do anything to make this happen and that he would be ok. I tried my best to believe them.  Either way I was in love.

So if you are reading this because you are scared like I was, I want to tell you that your baby will be ok. Fibular Hemimelia does not have to define your baby, you as a parent or your life.  There are options and choices to make.  But for now just enjoy your baby.  That was the best advice I ever received and it came long distance from my Mom.  We were on the phone and I was stressing wondering what caused this and what to do, and she said “Jen he’s a baby, just enjoy him”. So thats what I did.

footprints

29 thoughts on “If you are reading this (first post)”

  1. Thank you so much this has helped me tremindissly … I knew from our first ultrasound about his fh but they told me is something called mesomelia …. Then told me it was micromelia …. It was really hard to with .. They told me he would not make it … I went my whole pregnancy just a wreck … But pray and support from my fiance got me threw it … And when I had my C-section he came out just healthy as can be …. He also held his up and looked at his father when they brought him to me … It was the most wonderful day of my life …. He only a month old burps himself holds his head up talks sings in his sleep … He is just wonderfull … I have told the doctor that I am not making a descion right away .. That I want to wait and talk to other specialists … We call him our peace baby cause his right hand is a peace sign …. If you know a site where I can find a specialist please send it my way Thank you …..

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  2. Congratulations on the birth of your peace baby! Sounds like another strong little boy and you certainly are a strong mommy!

    Taking your time and researching is the best thing you can do. Nicholas sees Dr. Standard at the International Center for Limb Lengthening in Baltimore and we could not be happier with him and the center. They have treated sooo much fh that I feel like Nicholas is just another patient (not exactly just another patient because he really is an awesome kid but when you walk in and see kids in fixators all over the waiting room you know you are in the right place). There is a link on the left for the center. I could send you more info if you email me.

    All the best to you and your little boy. I would say enjoy him, but it sounds like you have that covered already!

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  3. How old was your son when he started to have sugeries? Did you have an option to stop the growth in the good leg? I just ask because we have that option as well as the lengthing. My daughter was just born 2/14/11 she is my blue eye chunky cheek baby girl :). I also have a 5 yr old and 3 yr old who do not have any issue. We also found out Kylie had missing toe and her rt foot did not form all the way. Her RT foot is shorter than her left. We went to Buffalo Childrens yesterday and they said Kylie had FH. Let me tell you I am so scared since they told me to research into it via internet. Thank you for posting your story It has helped me A LOT…..but I did cry see what you posted about how your son Nick felt; thats my biggest fear is the world and other kids. I had a normal pregnancy and nothing was picked up on my ultersound. If you have any information please keep me posted as we are just starting out.

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    1. Sorry I did not see your comment till today. Congratulations on the birth of your baby girl. I know it is hard to imagine that she could be teased some day. I try to remind myself that all kids have issues and get teased at some point. Nicholas’s little sis Charlotte has had a much harder time in school than he has. He seems to have the kind of personality that can handle it and I bet your Kylie will be the same way. All the kids I have met at the RIAO are amazing. The world is not as unkind as I would have thought in many ways. Little kids are easy. I figure by the time he gets with the kind of kids who would more likely tease him I hope we will have given him a strong enough base at home so he can take it in stride. Even if he is sad for a while. It wont keep em down!

      Nicholas will likely have his left leg’s growth stopped early. It is a great option to have! Feel free to message me anytime with questions. Also check out the FH and limb lenghtening support group on FB and Dr. Standards monthly chats are a great way to get the best medical info short of going to Baltimore IMO : )

      Wow I have a 7, 5, 3, and baby girl under one. We have similar families.

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  4. Wow. Great blog. Our son has had two lengthenings (Tibia in 08 and fibula in 11), eight plate, ankle reconstruction, and achilles lengthening. Like your son, my son has amazed me through this whole process. God has really given him the strength to deal with the emotional and physical stress. It hasn’t been easy per se, but we’ve made it, even when my son broke his leg with the fixator on because he fell off of his bike. Amazingly, the dr replaced the pin, straightened my son’s leg, and had my son running again in 3 days!! Unbelievable.

    I look forward to sharing this site with my son. I think it would be good for him to see that he’s not the only one. He’ll get a kick out of seeing your son in his cast. My son just had his orthofix rail removed on Thursday and now he’s sporting a green cast for the next month.

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  5. I’m a 34 year old woman with fh. I was born with a shorter right leg and foot. I also have three toes on my right foot. I never had lengthenings; but, I did have a surgery in 6th grade to slow down the growth of my left leg. I have a lot that I could say about growing up with fh; but, the most important thing I can offer is that your kids will be fine. They will be stronger, more resilient and more compassionate than most people you know. Their biggest asset is you, their parents. My mom taught me how to thrive while being different. Fh will not hold them back. I played every sport imaginable growing up (including gymnastics), excelled in school (all the way through law school), and have consistently had more friends and loved ones than I know what to do with. I can say, unequivically, that being born the way I was made me a better person.

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  6. Thank you so very much Lexy for you comment! I had to share it on our Fibular Hemimelia and Limb Lengthening awareness group on facebook. There are a lot of families of little ones on there who need to read this stuff. You are an inspiration. We had a hard few days… Nicholas broke his arm yesterday but your comment is a great reminder of what matters. I do have a remarkable boy and he will heal and move on from this too.

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    1. It’s my pleasure. I know how isolating it feels for parents and kids dealing with fh. And, I’m sorry to hear about Nicholas. Casts in the summertime are the worst! He sounds like an amazing boy and will bounce back in no time. 🙂

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  7. Hello!
    My name is Aline, i’m from Brazil, but I am living now in Hagerstown, around 60 miles from Baltimore. (luck or what??)I have a 2 year old little girl with FH. She will have her first lenghtening at RIAO in middle may. I’m just glad to read posts like yours and feel better knowing that we can go through all this. But I’m scared, of course…… The clothing tips are awesome! Best wishes for you

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    1. I have a friend and fellow fh mom who makes amazing covers! And if you are on facebook you can join our group Fibular Hemimelia and limb lengthening awareness and if you ask for tips you will get them!!! Covers and clothing are not too hard. If I can do it anyone can!

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  8. My beautiful, perfect daughter was born November 12, 2013. I had an easy pregnancy too! I worked up to 38 weeks as a CNA in a nursing home. My OB did a quick u/s every appointment and always told me how great the baby looked. When my Abigail came I was so happy I didn’t notice anything except that she was finally here and had a head of hair. They took her while I got stitched to check her and whatnot. It took a little while. My OB had finished and I was getting cleaned up and he came back and told me she was perfect but was club footed on the right side and missing two toes. I didn’t care at the time I just wanted to hold my baby girl. After we settled in they came and took xrays and the next day the dr came and told me she had no fibula. She’s three weeks old and last week she went to Riley’s to see an orthopedic surgeon. He said her femur was 1cm shorter and her tibia is bowed which the original dr told us. He simply wants to see her again in 3 months. My heart breaks when I think of my perfect girl getting any surgery. Ive read about amputation but I love her little foot it makes her her. I’m really looking for other moms who’ve been through this before. And prayers 🙂 your blog just reminded me so much of when I found out about Abigail having fh. I also have pictures of her holding her head up looking at daddy at only a day old♥

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    1. I am so glad you found the blog and the group! The group is full of parents who know how you feel! It is a great community of support and information sharing! So so cool that your girl picked her head up too. Our children are phenomenal!!!!

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    2. I have a 9yr old daughter who has FH. She also has 3 toes on her foot. We have just started leg lengthening. I know you wrote this almost 2 years ago, but I just thought I’d share with you that I have started a blog to document her journey, just in case you have to go down a similar path and she might be encouraged by seeing photos of a “big girl” who has the same condition xx

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  9. First, thank you so much for creating this page. My son was born January 29, 2014. It wasn’t until August 11 my husband and I found out he had FH. When he was born we immediately noticed an indention in his left shin, we were told by several different doctors and nurses that it was “just a skin fold” or a birth mark that would go away as he got older and grew more. Starting when he was about 4 weeks old I noticed that he knees did not match up. At his 2 month check up, I brought it up to his doctor that his left leg seems shorter than the right. After measuring, I was told ” They are the same length, it’s just the way he is holding his leg. ” I finally got a referral to Arkansas Children’s Hospital about 40 miles from where we live. The referral was not for limb length descrepancy, but for possible club foot since his left foot was slightly turned out and did not rotate the same as the right. It was at ACH they found he was completely missing his left fibula and both the femur and tibia in the left leg were shorter than the right. Since that day my husband and I have been devastated. Not because our baby was different, but because the thought of him being in any pain through surgeries broke our hearts. We have been struggling in making a decision on what is the best road for our baby boy. He is now 8 months old and one of the happies babies I have ever seen. We have been given two completely different recommendations on treatment routes. ACH recommended a brace at this point and seeing him again in 8 months and specifically said they DO NOT recommend amputation at this point. We also went to Shriner’s hospital in Shreveport for a second opinion from a doctor who might see more of this condition. There we were recommended we amputate his foot preferably by the time he is a year old. My husband and I have been discussing and weighing the options and we have not come to a decision yet. We honestly just don’t know what the best thing to do for our son is. I have read about Dr. Standard and Dr. Herzenberg. They sound amazing. Unfortunately, living in arkansas, we will not be able to travel to MD as much as it would take for treatment at their facility. Was there anything that helped guide you in the direction of making the decision that you did for your sons treatment? I am reaching out because we do not have any family or friends who have been in this position let alone have even heard of FH before. Thank you so much for creating this website. I have been looking for a support group of people whose stories might help guide us in making the best decision for our son. Also, thank you for letting me share my son Ryker’s story up to this point where we are now. It helps just to tell somebody who has personal experience with FH. God bless you, please keep my son and our family in your prayers, that we will make the best decision.

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    1. Congratulations on the birth of you son! I am so glad you found the blog. My first instinct is to say that your baby will be ok no matter what you choose. My second instinct is to say that if his fh is mild enough to have been missed I doubt it is severe enough to amputate. For Nicholas my thought was there was no reason to amputate a functional foot. Just no good reason. Even if you can’t make it to Maryland maybe you could attend one of Dr. Standards web chats. It’s the most amazing opportunity to get an expert opinion at zero cost. He may be able to suggest someone closer to you. Also there is a link to the Fibular Hemimelia and Limb Lengthening Awareness support group on Facebook. Many parents in the group take their children to other docs. Maybe one is closer to you. There is so much support and encouragement there. Don’t let any docs push you to choose right away. You need time to reflect on your options. Limb lengthening is making advancements that I hardly dreamed of 11 years ago when my son was born. I never wanted him to look back and feel we didn’t try to save his leg. From the start I felt choosing to remove another person’s limb needed to be done only in the most extreme circumstances. But this is about as personal as it gets. Families who choose amputation are as sure about their choice as I am of mine. Some choose it because there is no other choice given. Some feel it is easier. Listen to your instincts and your heart. Come back and ask anything anytime.

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      1. Again, thank you! My heart also tells me not to go with amputation until we try interventions first. How can I attend a web chat with Dr. Herzenberg? I do not have Facebook. Is that the only way?

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      2. Facebook is the only way to be a part of the group. You could make an account just for that purpose. The web chat you can do! I will send your contact info to Nurse Lee who runs the web chats and she can send you instructions!

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    2. Brianne…..are you on the Fibular Hemimelia group on Facebook? ACH is where my son is treated for his FH. Feel free to find me on Facebook and I would be happy to chat with you about our experiences!

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  10. We are in NC and had a baby girl in February 2015 who had FH. I look forward to getting to know you through the blogs and facebook pages. Thank you for creating this page!

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  11. My brother has fibular hemimelia too =) We actually just finished all of his procedures-he’s 17 now and I’m 22 and we’re both going to University of Hawaii. We stayed in Baltimore at Ronald McDonald house on Lexington St. and had Dr. Herzenberg…these doctors are angels, and so is Marylin! My brother is a fast runner and played basketball on his high school’s team-he can play for hours, it’s so amazing. This journey has been the most amazing journey for my family, full of truly wonderful and blessed experiences. We miss Sinai and all of the wonderful staff, doctors, and PTs. Reading your blog brings back so many memories. Much aloha to your family.

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    1. Thank you for you for sharing some of your family’s story! It is so fun to hear about kids who have completed treatment! I feel like we have had many blessed experiences as well!

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      1. I just found your blog. It’s great to hear from other families going through similar experiences. My daughter is 9 and has just started limb lengthening. We have been blogging about her experience too. Thanks for sharing your journey 🙂

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  12. My son is missing his fibula they say when he’s full grown he will have a 3inch difference in his leg they are telling me they don’t think lenthening will help my son bc his ankle is not very stable he has a normal foot walks very well but they are pushing amputation saying they don’t think anything else will work I’ve been really worring about it all I have an appointment with a surgeon to talk about lengthening but the doctor says there just Gona tell me they what he told me your story gives me more hope I’m hoping things go as well for my boy as it did for yours thank you for sharing your story I feel a little better

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    1. Hi Melissa, thanks for commenting. Maybe you could get on a web chat some time with the RIAO docs. Many doc’s don’t know whats possible because it’s just not what they do. There are more answers out there!

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  13. Hello to everyone! Is the blog still active? I sent a request on your facebook group, but it is still pending . My little girl is 2 months old and of course we have the same problem. I would like to know if there is someone from Europe I can talk to or if there is an institution in Europe similar to International Center for Limb Lengthening in Baltimore. Please let me know if you know anything. Thanks!

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    1. Check your “other” or message requests folder. Moderators message people who request membership. We have to screen. Once you reply I am sure they will approve you. The group has grown so much we have a team working on this and still get behind. My apologies!

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