My 4yr old has his amputation in 34 days

My 4yr old son has to have major surgery in 34 days. He has a peusdoarthrosis in his leg due to Nf and it broke the minute he started to walk 3 yrs ago Jan 19th. It has been in a full cast changed every 6 weeks for 3 years. Just before Xmas it broke again. It is so week and deformed now nothing else can be done except amputation. I am his mum and God, I love him so much but I am trying to be strong but I am finding it very hard. I am trying to be positive but yet inside I am so scared and I don"t really know how he will cope with the op as he knows he has a poorly leg and wants it to work but yet he doesn't want it to go. We have been trying every day to think of the best solution for the last 3 years to save his leg and the best quality of life for him and pain free. There is now no option and it is happening so fast. I am scared that the op will go ok. In fact I am terrified. I really don't want my baby to have this done. I have also been reading discussions about blood clots and excessive bleeding and I think it's got to me a bit! I suppose I am just calling out for some support and to find out if any of you guy's have been through the same op as my son? You are all so brave and are are all going on so many different journey's with Nf. I have 2 other children with Nf. My 5 yr old has many neurofibromas and yet he was first diagnosed and yet the local children's doctor still won't refer him to a neurologist. Codysmum

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You and your little guy will be in our prayers today and into the surgery and recovery. My son underwent major surgery 5 weeks ago and it was horrifying until I saw him after surgery - but seeing him was the sweetest moment of my life. I hope you will find yourself comforted and know that as a mom it is ok to be so scared - you love your boy. You know the full in's and out's and will make the best decision for your boy. You are his momma for a reason - no one can love, comfort and be there for him like you - that is what he needs. Remember we are thinking and praying for you - I will put your screenname on my bathroom mirror to remember you all each day.

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Awww, can I give you a cyber hug?

I am so sorry, this must seem like a nightmare. I don't have any personal experience with this but I can tell you that I've known of several kids who ended up having to go through amputation and in the end I don't know of one single parent that regretted it. Obviously they wished they'd never been put in such an heart wrenching situation in the first place....but didn't regret making the decision they did when it finally came. And I've known of several NF adults that didn't have the surgery young, and wished that they had because they felt like they'd lost out on a childhood. I know that doesn't make you feel any better now...and I'm sure things will probably be worse before they get better....but I hope that in time, when you see your little guy going out for T-Ball or doing everything his friends can, that you'll come to similar conclusions.

Hopefully some of those other folks will post soon.

Please let us know how the little guy makes out.

Hugs

Cindy

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Hi,
I don't know if this is going to make you feel any better, but I am going through the same anxiety and doubt everyday. My son's surgery date is March 5th and we have decided to amputate his lower right leg. He had the rod surgery back in May 2011 at 1 and we are now 8 months post-Op and it is not healing. It is the hardest decision I ever had to make and I hope it is the right one. When I look at him and I see his drive and determination...I know it is the right decision. Our children are so strong...they will surprise us! Hang in there and please don't hesitate to write. RyGuy's Mom

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Be glad that the amputation is not due to a plexiform gone bad. At the nf walk in irwindale I met someone last name Shah who found out he had nf in his native country Jordan after a plexiform went bad and they had to take his arm chemo was no help neither was radiation.

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Hi

Have you thought about getting a second opinion at a well reputed top University Hospital medical centre first (unless your child is already treated there)?
That's what I would do myself.
I notice kids are getting amputation with NF in this day and age when orthopaedic techniques are advancing continually.
Perhaps, you need to seek other people's opinions having gone through something similar, pref from those whose children didn't need to go through amputation? Are there any fine surgeon who can deal with this type of difficult cases?
You're in My prayers.

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I'm so sorry to hear about your struggles. My daughter recently had what is called a boyd amputation of the foot and ankle where they fused the heel pad to the bottom of the tibia. By preserving the heel, she is left with a good weight bearing stump. Is this something that they have considered? She still has a rod in her tibia and it didn't make much sense at first to only take the foot and ankle when the problem is the tibia, but the doctors have said that by removing the movement it stabalizes the tibia, so that it heals. It took three opinions explaining over and over how it works before I could begin to understand. She has psuedarthrosis of the tibia and hers broke for the first time when she was six months old. She is seven now, we had two rod placement surgeries to try to save the entire leg. They assured me that this is going to be a better quality of life for her. This was the next least invasive surgery to keeping the entire leg with another rod placement surgery. Our other option was a below the knee amputation. I'm glad we went with the boyd amputation, hopefully it will work for her. She had her surgery in October and is already up and walking with a prosthetic without pain. It is going to take quite a bit of physical therapy to get rid of the limp. It was a long road to recovery and exhausting so I hope you have some family and friend support. You all will be in my prayers. I hope everything goes well with your little boy. Kids are very resilient and it sounds like he has a lot of support from you!!

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Hey there,

I haven't been on very much lately...but I'm glad that I saw your post. I know firsthand...that fear of the unknown. My 15 year old daughter also had a bowing tibia...along with that....a massive plexi that went from her ankle to her knee. When she was three...the Doctors at the time suggested amputation...as she had already suffered fractures and was having unbelievable pain in her plexi. I remember thinking back then...that cutting my child's limb off had to be the worst thing I could ever imagine. That was until 3 years ago...when a piece of my daughter's tumor became malignant. She had surgery to remove that piece...then she injured the leg and was in the ICU for two weeks with an antibiotic resistant infection...then we did a chemo trial...only to have the cancer return this year. Then was the reality that this could really take her life...and we could lose her. We knew at that moment that amputation was our best chance for long-term survival.

So as she was graduating from the 8th grade...we were preparing to have her leg amputated over the summer. They did a procedure called a knee disarticulation. This is where they amputate the leg through the knee joint...leaving the entire femur in tact and allowing for a wider surface to bear weight. When I told Amber the cancer was back and we were facing amputation...her reaction was "Great!" I thought...surely she was in shock! She said "Mom, my entire life I've never been able to ride a bike...take a dance class...or play a sport. Kids with fake legs can do all of those things!"

We had our amputation on July 29th. To be honest I expected it to be horrible...and it really wasn't. They kept her very comfortable in the hospital...she had little to no pain. She had some muscle spasms for about 4 weeks after the surgery...but they gave her valium to help control those. She's been doing PT every day and learning to walk on her prosthesis and she's bringing the leg home this Thursday just in time for her 16th birthday. I asked her the other day if she had any regrets and she said to me "I regret not doing this earlier...just like you." She's right...that's my only regret. You will be amazed at how quickly your son rebounds and how strong he gets. Amber had issues with muscle tone her whole life...and the first night home from the hospital...she couldn't pull herself up into her wheelchair from the floor. Today...she can not only pull herself up...but she bumps up and down the stairs on her bottom faster than she ever walked!

Know that it will be difficult in the beginning...but you will be amazed at the progress...and know that you're not alone. If there is anything that we can do for you...any advice...or support...just say the word! You can reach me here or by email. If you'd like you can follow our story on Caring Bridge at www.caringbridge.org/visit/AmberWiers. The pain and fear that you and your son has faced up until now...is going to be gone. I know it doesn't seem like it now...but this will be a positive. And in a year from now...you will look back and say...thank God we made this decision. It's not even been a year for us and I feel that way! Take care and God bless. xoox

~Sue

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you are doing the right thing, trust me he will be able to do sooo much more on the prothstetic leg! i ski/hike/bike/work in a extremely busy kitchen the leg will take some getting used to, but after that he will be off up and running! take some time to watch the movie "a dolphins tale" the same company that made that dolphins tail made my leg!....look up hangar prothstetics when hes ready to be fitted, they are amazzing ppl and actually care about ppl and not just about $$ he will be able to do everything and anything with the new leg :)

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Thank-you all so much for all your support and care. I really respect and treasure what you are saying to me as Codysmum . You are giving me thoughts and strength that I can pass on to my son and the rest of my family . There is some good positive energy out there from you guy's! I"m amazed at your own strength and your focus. I really admire you. Thank - you again . You are helping so much.

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Hi, I had my right leg amputated in 93 due to complications with NF. My amputation was a right-hip disarticulation so I do not have any bone left. As you know, this type of surgery is major and scary. I was almost 30 when I had my surgery and I was scared. But I also knew that the doctor knew what he was doing so I was in good hands. I think it is probably more scary for you than your son. He will recuperate from it quicker than you do!! :) Kids are tough. With the support system you will provide for him, I am sure he will get through this just fine. I was fitted for a prosthetic soon after the surgery but due to issues with NF I am not able to wear one but I get around just fine and I got around fine with one. However, I can move a lot faster without one on. Will your son be able to wear a prosthetic? He might think having one is cool, then he may think that it is no big deal.

I know how hard it is to have your child have major surgery. My son who is almost 14 had to have open-heart surgery when he was 2. He was running around two weeks after the surgery. Of course, I was freaking out since he was supposed to be careful but how do you tell a 2 year old to be careful? Hang in there!! Your family is in my prayers. Have faith!!

Tell him from one amputee to another, he will be just fine. And so will you.

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I have some great news that I'm sure will help with your decision. My daughter, who had the boyd amputation had her follow up appointment yesterday in the amputee clinic here at Children's hospital in Denver. Her psuedarthrosis is healed and they say that they typically always remain healed and only get stronger. We will have to do one more surgery to plate the growth plate of the knee to stop the growth of the tibia...for prosthetic fitting purposes. By doing that, they can make a prosthetic with a joint for an ankle. By preserving the good ligaments and the heel pad, it is going to keep her from having pain from putting pressure on the end of a non-weight bearing stump. I'm so happpy with this outcome and If I could... I would travel back in time and have it done when she was 18 months old and it would have saved her so much pain!! I have a lot of confidence in this treatment for psuedarthrosis of the tibia. Good luck with your little one's surgery! I have been thinking of you all often!

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my heart goes out to you and your child. I can't imagin what you're going through but as his mom I know you'll do what you feel is best for your son. I hope you have lots of good friends and family to support and be there for you--that you're not going through this alone. I hope and pray that things go well for this surgery. As for your other child, since it seems her doctor isn't listing, once your son is on the road to recovery you might try finding a doctor who will listen to you and one who has knowledge of NF. It always amazes me how many docs don't anything about this disorder. I want to wish you the best of luck with everything. I'll be keeping you and your family closr in my heart and prayers.

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Hi there, I am so sorry you are going through this. My daughter is a little younger than your son and she also has pseudoarthrisis of the tibia. I got a great post from sal85 who also had an amputation as a child and was so much happier for it -- he does all sorts of activity now that he could not do before and even rock climbs! Of course you want to get a second opinion before any major surgery, but once it comes down to needing to amputate, it really seems like, when things get to that point, life gets so much better for the child with a prosthetic... There are a lot of people at this site who have gone through that, and that seems the consensus. I will be thinking of you and sending lots of love and warm wishes to you and your family.

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I feel your worries, but i want you to know that my amputation was the best decision that i ever made. I spent almost 17 years in a cast, I had bone transplants, rods, graphs all to try and save my leg. All of those things made me a stronger person. I had a Symes amputation, which is essentially a dis-articulation of the ankle, for some reason with the majority of NF 1 people with pseudoarthrisis this can cause the tibia to heal. I can essentially walk on what's left of my leg. I do not need to wear my prosthesis around the house. One thing that helped me is that i feel that i never even really had a foot to begin with, so when it was amputated I didn't feel like i lost anything. I work as a Physical Education teacher so I believe that there are No Limits to what you can do as long as you believe it can be done.

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Have gotten a second opinion? My leg was deformed and broke when I was four. The doctors did bone graphing and I have use of my leg although it is weak and I wear a brace 24/7. I had this done in the 1970s. I am 39 now. I will say the doctors told me if the fourth operation didn’t work, they would remove the leg.

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I’m not sure if you are able to come to NYC but check out this doctor
http://limblengthening.com/indexaaa.php Dr. Rozbruch he did limb lengthening surgery and straightened my bone in August of 2011 he is a miracle worker,

Anthony

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My son has NF1. He has a bowed tibia of the left leg and a plexiform neurofibroma that goes from his groin to his ankle on his right leg. He has been in a brace since he was 2 years old and so far has not fractured his leg. He will be turning 5 in a couple of weeks. Part of me wishes we could've amputated it by now so he would grow up on a prosthesis. I know this isn't an option I just hate that there is a great chance he will face a bleak future if he does break his leg. From what I understand it's only a matter of time. IF it does break and needs amputated he doesn't even have a "good" leg as his right leg is slowly being strangulated by a plexi. I'm sorry your child needs an amputation. If I was in your situation I would be making the same decision. Amputate now or face a lifetime of surgeries and pain.

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Please consider getting a 2nd opinion. I dont think it really needs to happen. Please consider it. When I was a little girl they too told my dad that they had to amputate my leg but my dad said NO WAy and refused. I am now 36 years old and i have my leg. Alot of surgeries later and casts and braces I am doing very well. I am not sure where you live. Or if you are willing to travel to save his leg But you should go see a great team of doctors. My doctors were from Columbia Presbyterian Hospital in NYC. Let us know how you make out.

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That's were I had my surgeries goring up was your Dr. Dr. Harold Dick?

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I was like your son. I was in a cast for long time, so my mother and father know what you are going through. There was another mother feeling the way you feel on here. I talked to my mother she told me to her " pray, think what is best for your son" and keep your faith.

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