My 14 month old got sick and I took her to the ER. To R/O pneumonia, they did CXR...lungs were good, but WOW! You could see a mile away on those films that she has significant deformities in her spine and ribs. Now that she's starting to walk, you can really see it in her gait, how she kind of is bent sideways and one shoulder is higher than the other.
Poor little thing is so cute though, she has no idea and waddles along all lopsided, still happy as a clam in mud!
Anyhow the DX is hemivertebrae and fused ribs on one side, with missing ribs on the other. It's unclear the exact course of treatment, but surgery at some point is a sure thing. The question is, will they try to fix her back now, as a baby, or will they kleep trying to fix it every few years as she grows, or what? I just don't have any answers right now. Not because anyone is laying down on the job, but just because she has not yet seen the pediatric orthopedist. As soon as Tricare gives the referral, I hope to know more.
I just wanted to offer my prayers. It sounds like your daughter has the love of a wonderful mother, and you have received some good advice here. Good luck.
Thank you for the resources and prayers...I truly appreciate them! Also thanks for nicunana for sharing your story. I'm glad things turned out well for your dd! How long did she have to wear a cast? Was it a body cast? Poor thing!
like the others, my thoughts and prayers are with you too.
while i have worked peds forever, i don't recall having seen this. however, i can tell you, that kids are amazingly resiliant. while it is the job of us parents to worry over everything, they bounce along happily, doing kid stuff. just like it should be .
There are several scoliosis groups on Delphi Forums, but don't have the info right now.
Your daughter's problem isn't exactly idiopathic scoliosis, but is a congenital deformity of the vertebrae and ribs that cause curvature of the spine, as does scoliosis. The organizations listed above have resources listed on their websites, and if you contact them, they are very likely to have contacts for you with other parents and people with your daughter's condition. These groups include congenital spinal deformities as within their purview.
I developed a severe juvenile scoliosis which was not treated until I had a 98 degree curve with significant rib deformity at 14. Skeletal traction, surgery (fusion, Harrington rod), and a body cast couldn't give me a straight back. Sometimes I have trouble convincing the people giving me preemployment physicals that I am OK to hire -- I have experienced job discrimination in nursing (one reason I've gone back to grad school -- hiring qualifications are different for CNMs and NPs than for plain ol' RNs). I come from an older generation of patients for whom treatment was limited and there was little sensitivity on the part of health care providers, and there certainly wasn't the internet with its wonderful resources and support groups for both parents and kids. Your child is blessed that her condition was caught in time and she will be treated.
Hi, I have been trying to search this message again. I was registering when I first saw this message. I wanted to reply but I couldn't since I wasn't done with my registration.
Can I have your email ad?
I saw a similar case on TV just last week, I hope I could just email it to you.
There are several scoliosis groups on Delphi Forums, but don't have the info right now.
Your daughter's problem isn't exactly idiopathic scoliosis, but is a congenital deformity of the vertebrae and ribs that cause curvature of the spine, as does scoliosis. The organizations listed above have resources listed on their websites, and if you contact them, they are very likely to have contacts for you with other parents and people with your daughter's condition. These groups include congenital spinal deformities as within their purview.
I developed a severe juvenile scoliosis which was not treated until I had a 98 degree curve with significant rib deformity at 14. Skeletal traction, surgery (fusion, Harrington rod), and a body cast couldn't give me a straight back. Sometimes I have trouble convincing the people giving me preemployment physicals that I am OK to hire -- I have experienced job discrimination in nursing (one reason I've gone back to grad school -- hiring qualifications are different for CNMs and NPs than for plain ol' RNs). I come from an older generation of patients for whom treatment was limited and there was little sensitivity on the part of health care providers, and there certainly wasn't the internet with its wonderful resources and support groups for both parents and kids. Your child is blessed that her condition was caught in time and she will be treated.
The best to your family.
Thank yo for this WONDERFUL post! I really do feel lucky that the spinal prob was caught early. And do you know what? It was caught totally by accident! I guess I already mentioned that in the first post.
I am sad for you that you have suffered because of a delay in treatment. But I am thrilled that you have become so successful! You certainly have been through alot. I haven't peeked yet at the sites you provided, but i'll ask you anyhow: If I remember correctly from nursing school, surgeries like fusion of the spine and harrington rods and so forth require the patient to lay flat and still after surgery for a long time. Do you have any idea how they might accomplish this with a baby? I imagine sedation But for how long?
I have scoliosis, but it is very slight and really never caused me any trouble. Do you know what causes these deformities? I would love to hear anything you would like to share from your personal experience. Thank you so much and BRAVO to you!
... If I remember correctly from nursing school, surgeries like fusion of the spine and harrington rods and so forth require the patient to lay flat and still after surgery for a long time. Do you have any idea how they might accomplish this with a baby? I imagine sedation But for how long?
I have scoliosis, but it is very slight and really never caused me any trouble. Do you know what causes these deformities? I would love to hear anything you would like to share from your personal experience. Thank you so much and BRAVO to you!
You can get statistics on incidence, degree of severity which curves progress, &c, from the websites (don't know them off the top of my head and too tired now to look things up ...) But the vast majority of curves DON'T progress past a minimal point, like under 20 degrees, like what you have, and never cause problems. Mine progressed rapidly and very severely, which isn't common. Researchers are trying to figure out how to predict which curves will progress rapidly, which won't, so that teenagers won't have to unnecessarily wear braces, &c. Your daughter's condition, of course, is different -- as she grows, the defect in the vertebrae and ribs will worsen any curve or problem.
Surgical techniques have improved since I had my surgery. Harrington rods are rarely used now as there are newer, more effective, implants available. Casting is no longer needed, although most patients get a brace (kind of like a Boston brace) to wear when out of bed only. Patients are out of bed within 2-3 days of surgery. I was in bed 2 months ... things have changed. Pain control has left the dinosaur age as now there are PCAs, and there is much more awareness of pain in children.
I had a horror story myself and have written about it; am trying to get it published.
I strongly encourage you to contact those scoliosis associations to find parent support in your area. Other parents can refer you to great surgeons, nurses, other support people.
Specializes in LTC, assisted living, med-surg, psych.
I just got home a little while ago and ran across this thread.
I'm so sorry to read your post about your little darling, but glad there are things that can be done to fix her up. Prayers being sent up for your family, Meerkat......and please keep us posted.
But for how long?
Lurksalot, BSN, RN
236 Posts
I just wanted to offer my prayers. It sounds like your daughter has the love of a wonderful mother, and you have received some good advice here. Good luck.