This week, an email came through my inbox about a girl who has had surgeries like Wren's - a thoracotomy repair of a coarc and a midline sternotomy for sub-aortic stenosis. She is now 14. Her mother shared that she has recently been diagnosed with scoliosis:
I took her to a Scoliosis doc on Friday, and they very calmly told me thatshe has non-rotational non-idiopathic scoliosis (10% upper and 20% lower in the
oppositedirection ) that's a result of her heart surgeries.They told me that about 35% of the kids that have heart surgeries develop scoliosis.
I'm very frustrated! No one told me to watch for this! ... I have never seen this in anything I have read about CHDs, and...I feel that if I had known about this, we could have kept it from becoming this bad. [When] she goes back to her cardio ...I intend to ask about it then, esp.whether it really affects this many CHD kids. Its a specific kind of scoliosis - shifting out to the sides, not twisting of the spine.Apparently it has something to do with scar tissue restricting upwardgrowth of the spine.
I know that Izzy has scoliosis but I thought that might be something to do with Phaces, not OHS. I will be asking our pediatrician to look into this but meanwhile, has anyone else heard about this association?
6 comments:
Oh my. Nobody mentioned this to me before. Chris had a thoracotomy to repair his CoArc and will have a sternotomy whenever it's determined his valve needs some work. I don't have any knowledge, just been googling around. I will be asking about this when I see our family doc next week, asking her to do some careful monitoring and I'll be asking at our next Card appt too. If you find anything, please let me know?
I know, it is concerning. I have emailed our cardiologist and will also ask our pediatrician to keep an extra careful eye out for issues if this is founded in fact.
Let me know how the googling goes. I hope you find nothing too frightening :)
Izzy does not have idiopathic scoliosis. She has neuro muscular scoliosis hers' is not thought to be related to her heart condition/surgery. When I looked more into scoliosis I did see that children with CHD had a higher risk also if it is in our family here seems to be an increased risk. There are different types of scoliosis s well infantile idiopathic congenital adolescent. I would talk to his pediatrician if you are concerned about it. Izzy's curve was very visible to us and needed treatment but was also not idiopathic
Ah, Wyndi.. thanks for clarifying.
Anyway, I emailed our cardiologist about it and this is his response:
"...it is not the sternotomy to blame, it is the thoracotomy. The thoracotomy disrupts the growth plate of the rib, or removes a portion of the rib entirely. This results in asymmetric growth, thus putting stress on the spine as the child grows. We should always be on the look out for scoliosis in this patient population. It is my opinion that xrays of the back are unnecessary; solely a good physical exam should be sufficient."
I ordered Izzy's medical charts and saw notes from her pulmonary dr saying that he saw a possible scoliosis dated back before I had noticed and way before her DRs proving that reading all the reports and cc of clinic notes helps keep us on top of things as well. I wish I had read that wold have helped to pull it when I was tiring to get the DRs to notice the problem huh!
hey Shannon,
I asked my dad about his experience (as a paediatric orthopaedic surgeon) with scoliosis in heart kids. He said: "Yes, it can occur, and routine simple examinations once a year should always be done. Most patients require no treatment, but some do." So he seems to concur with your cardiologist.
Hope you and the boys are continuing to be bug-free. Over here in Geneva the boys (and Garrett) have had a seemingly continuous stream of viral infections over the past few weeks. Enough already! (I'm just waiting for the other shoe to drop :-)
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