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 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.
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 …..
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!
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.
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.
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.
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.
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.
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.
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
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!