My Daughter Silje Has Blount’s Disease: Introduction

 

 

 

 

 

 

I don’t even know where to begin but I decided that even though I haven’t wrote anything very personal on this blog in a very long time it would be absolutely criminal of me not to document for myself and others, my daughter’s Silje’s experience with Blount’s Disease. You’re probably wondering what Blount’s Disease is.

 

What is Blount’s Disease?

Blount’s Disease is pretty rare. It occurs in young children & adolescents.  It’s not genetic as far as anyone knows. It is a growth disorder of the shin bone (tibia). They think maybe it has something to do with the effect of weight on the growth plate, which is located on the top of the tibia. It can cause bowing that rapidly progresses.  From all that I have read it seems that a lot of children under age 3 have bowing of the legs naturally & this is something they grow out of. With Blount’s the bowing get’s worse. As far as I know it can be diagnosed earlier but it’s not until around 18 months that they have some idea that it might be abnormal or getting worse.   Is this related to the old wives tale that children who walk early might have bowed legs? It might be, there’s no way to tell.  I never took it seriously until my daughter was diagnosed with Blount’s.

 

To understand a little more how this works I’ll explain. In kids who are still growing, the growth plate at the top of the tibia, which is called the physis is affected. It’s made out of cartilage, which is weaker than bone. The job of the physis is to allow the bone to lengthen and grow. Sometimes, due to obesity, early walking, various other issues, the physis has to bear more pressure than it is able to. The top of the tibia get’s damaged in a way that it may even stop making new bone. But the outer part continues to grow normally.This uneven bone growth, along with increased pressure can cause the tibia to bow outward instead of grow straight.

 

Before you freak out and say “Oh my gosh my baby has bowed legs”, remember, as I said bowing is very natural in babies & they will normally grow out of it. Blount’s Disease is rare and as far as I know so far it will show up differently on x-rays than just regular bowing. If you view the x-ray below you’ll see that at the top of the tibia bone it is slightly beaked. Meaning it comes to a point and sort of sticks out.  This is one of the ways they identify Blount’s.

 

If Blount’s is discovered early enough sometimes bracing the legs can help correct the situation. Other times that doesn’t work & surgery can be involved. One of the surgeries involved consists of cutting off the tops of the tibia & setting the bones into place. Sometimes these surgeries have to be performed multiple times over the years. I’m not very familiar with the other types of surgeries but I know that sometimes they work & sometimes they don’t. Sometimes people are in braces for years on end. Some lose inches off their height, some are in wheelchairs for weeks on end as they heal. The outcome really depends on how bad it is & what type of treatment is provided.

 

I don’t know much more than this. I’ll continue to share all that I learn along the way.

 

A Little Background

Silje & her brothersMy daughter Silje was born in June of 2012. She’s currently 20 months old. Her entrance into this world was a dramatic one and you can read all about that right here.

 

Silje was born almost 12lbs!  She had a prolapsed cord & was just about to exit my body when I believe her head probably compressed the cord a little & it cut off her oxygen supply. In fact when she was born her actual Apgar score was 0. The Apgar scale is measured by evaluating the newborn baby on five criteria on a scale from zero to two, then adding up the five values thus obtained. The resulting Apgar score ranges from zero to 10. The five criteria are summarized using words chosen to form a backronym (Appearance, Pulse, Grimace, Activity, Respiration). Silje was blue, she had no pulse, & she was not breathing. Just yesterday while cleaning I found the bills for her birth, listed on one of them was “resuscitation” & something about aspiration, and it reminded me of just how serious our situation had been. I myself hemorrhaged & had to have several transfusions.

 

She could have died or been left with A LOT of problems but thankfully the only thing we’ve dealt with so far is a slight speech delay, until now. She’s an incredibly smart girl, listens well, rarely acts up thank goodness but she can’t talk that great yet. Her older brother had a slight speech delay though as well & at 5 he’s just fine now.  She’s still the cutest thing ever & I consider her my miracle girl.

 

Early Walker

Silje standing at 7 & 1/2 monthsSilje was crawling & standing by 7.5 months & began walking at 9 months, just like my 2 boys Vincent & Aidan. Both were big babies as well. 10lbs & 9lbs. No I didn’t have diabetes, it’s just genetic. At about 12 months I started to notice she seemed a little bow-legged. My middle son had this problem as well & I remember being so worried about it but the Dr. had kept telling me that he would grow out of it & by 3 years old he has. There is no evidence of bowing at all. 

 

Silje is different. Although she takes after her brother with the bowing her bowing looked a bit different. I had always wondered if maybe this is because she was so big. She could barely fit in my belly. In fact I got a hernia & diastasis recti while I was pregnant with her. She was 22 inches long & my belly was larger than life but nothing was said at her well-baby visits even though I brought it up a couple of times. I was told she was fine.

 

By her 18 month appointment her Pediatrician told us that we needed to have her seen by a Pediatric Orthopaedist. He was concerned about the bowing in the bottom of her right leg. As you can see in this picture it’s very hard to notice. However you can tell what a big girl she is. She was 37 inches & 27lbs at the time.

 

Silje_18monthappointment


 

 

Your Daughter Has Blount’s

Silje's leg X-rays
 
 

I took Silje to the Pediatric Otheopaedist that was recommended by her pediatrician & they x-rayed her legs.  As soon as the Dr. walked in he said “I think your daughter has something called Blount’s Disease”.  I could see the bowing on the x-rays and I have to tell you that it broke my heart.  How could I have accepted this as normal for so long? I felt so horrible. In fact I’m crying as I write this because I just feel like I failed my daughter.  As wonderful as she is she’s sitting here next to me patting my arm telling me it’s ok. But is she going to think it’s ok 10 years from now if her legs aren’t straight & she’s had multiple surgeries? Why didn’t I question her Pediatrician more than I did?

 

The surgeon told me to visit an office down the road that made prosthetics & braces. He specifically said that her braces would look like Forrest Gump braces & that she would wear them 23 hours per day. After we received the braces we were to come back to the Dr’s office so that he could talk to me more about the treatment plan.

 

Off to the Orthotist

A few days later we visited an Orthotist just a few miles down the road from the Surgeon’s office. When we walked in the office was sort of “blah”.  Everyone there was very nice though. The lady at the front desk called the insurance company so we ended up waiting about 40 minutes before we got in. She told me that the braces would cost us about $500 out of pocket. WOW. In total they’d be almost $4000.  I couldn’t believe it. What if I didn’t have money to pay? Would my child just be forced to be crippled? It just saddened me so much because I know there are children’s parents out there that can’t afford it. I can’t afford it to be honest, but I will make it happen.  

 

Silje at the Orthotist waiting to get measuredWe went into the office & I noticed there were crumbs on the chairs from the patients before us. Ok I’ll deal with it, the office is not that dirty. I thought to myself. A man came in & he measured my daughter’s one leg (the bad one) by using a pair of wooden calipers & placing a piece of cardboard he’d ripped off a box under her leg.  He marked everything with a pencil. 5 minutes and it was over. What??? Where is the casting material to make a mold of her leg? Where is the new technology I read all about? What’s going on. I wondered.  He then brought in an old school brace made of metal & leather with straps. Just like Forrest Gump.  My heart completely sank. Is this the best they can offer my daughter? $4000 and we’re doing the same thing they did in the 50’s?

 

I said “So, we’re talking old school?” He said “Sometimes old school is the best school.” I couldn’t argue because I knew he was right.  I left there being told that it would be about 2 weeks before we got the braces. I drove home in tears.

 

2nd Opinion

Every single day since that appointment I thought to myself. “I can’t do this.” “I can’t handle this. This is my daughter’s legs. What if these braces don’t work? What if she cries? What if it breaks her spirit? Why are her braces old school when I see all this new technology online? Why did he use cardboard.. is that normal?? If I keep these braces the insurance company will never pay for a new pair if we get a 2nd opinion.

 

The Orthotist’s office called & told me that they needed us to come in so they could try to fit Silje with shoes. Yes she would also have to have old school shoes that were connected to the braces & she was going to have to sleep in these things! That’s when I decided I couldn’t do it. I had to try to get a second opinion. Not on the fact that she has Blount’s but on the type of braces that are best for her.

 

Shriner’s To The Rescue?

 
I got on the insurance website & I called everyone in the general vicinity. They didn’t treat children. I googled Dr’s, I read stories, I cried some more & then I remembered all the women on this Facebook group I had joined ranted & raved about Shriner’s Children’s Hospital, but we didn’t have one in Michigan.  I called anyway.

 

Shriner’s gave me a little telephone survey & then told me that they do see children for Blount’s & that the closest hospital was in Chicago (About 5 hours away). They would set me up with an appointment & they would help me with a place to stay and get us to Chicago.  They said that there is a brace shop close to the hospital that they work with. I set an appointment for February 28th.  I got off the phone & I cried again.

 

I then called the lady in Michigan that was supposed to help us get there. She asked about our appointment & situation & she told me they’d give us train tickets or they would personally drive us. They’d pay for our food & they’d set us up at a Ronald McDonald house. They’d even give us vouchers for cab fair. They wouldn’t pay for the braces themselves but they’d help us with everything else. How amazing is that?

 

Dealing As Best I Can

If you haven’t figured it out yet this is all very overwhelming to me. I never officially announced it but I separated from my husband unofficially about 2 years ago. Surprise. Now people know why I always talk as though I’m a single mom. I have been, for a very very long time. We’ve had problems for years. He’s getting some help for his mental health & I’ve just been sort of waiting around for things to change.. and I’ve been here alone… dealing with everything.. alone. We still see each other & he see’s the kids on an irregular basis. He works, a lot but the children and I don’t benefit from that. He provides health insurance for the children. I’m grateful but, I feel very abandoned.  Last year my own mother walked away from us & never came back. She left me & my kids & decided she no longer wanted anything to do with us. (We had issues for years).  A million other things have happened since that time as well, but I’ll just save that for the book I could probably write if I wait. 

 

Right now I’m just a little pissed that this is what we’ve been dealt after everything else myself & my children have gone through. Obviously I can’t tell you about it all, although I’d like to blurt it out & get it out of my system.   But I can’t keep dwelling on things & crying about it because I have 3 little kids that depend on me, who love me more than anything in this world. I have to come to grips with everything and just do my best. 

 

My best is first and foremost finding my daughter as good of care as I can manage, next is just acknowledging that I needed to share this with other moms, who someday might find themselves going through the same thing.  I’ve been pretty sketchy these past couple of years as far as keeping up with my blogging, because of the family issues I was dealing with, but for this, I’m going to make sure I document every single step.  I really need the emotional support & I need to make sure that more information about Blount’s can be found on the internet.  As of right now there’s not a lot of info out there. By documenting this entire process I hope I’ll be able to help at least one person.

 

Thank you all for reading & most of all thank you for those that have been helping me through this.

3 Comments

  1. Neha
    Posted February 19, 2014 at 4:50 pm | Permalink

    I read your story and I am going to be ftm in June this year. I am so sorry to hear about your daughter but am sure with the braces and the advancement in technology, she would be fine and she would be fine soon. I will pray for her.

    I don’t usually add comments on facebook page but I read each and every post and it has been really helpful till date.You are doing a great job. Raising 3 kids on your own and dealing with so many issues. Kudos to you.

    In general, I am known to be a good listener among my friends and have been agony aunt for all my friends known and unknown to me. So, please, if you just ever want to take it out, blurt it out all to someone who is a total stranger..feel free to email me..anytime..

  2. Paget Sanders
    Posted February 22, 2014 at 10:31 pm | Permalink

    My daughter turns sixteen on Tuesday. She had the surgery right after her fourth birthday (something to do with growth plate issues). I would be glad to share our personal experience with you. Email me if you like. Our daughter’s legs were really, really bad. We started our fight with the doctors at 8 months, but we still had to go through the process before they would do anything. So, do not feel bad. We aggressively tried to get them to do something earlier.

  3. Paget Sanders
    Posted February 22, 2014 at 10:57 pm | Permalink

    I would be glad to share our personal experience with you. Email me if you like. Our daughter’s legs were really, really bad. We started our fight with the doctors at 8 months, but we still had to go through the process before they would do anything. So, do not feel bad. We aggressively tried to get them to do something earlier.

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