New here, congenital scoliosis

[grandmom_of_4]

My daughter gave birth to triplets in October. The smallest one had already been diagnosed with curvature of the spine in the womb. She weighed one pound 11 ounces at birth and now at 3 months, she is five and a half pounds. When she was born she did not have a lot of issues but as she is getting bigger the problems just seem to grow. She has been transfered to AI Dupont hospital in Wilmington, De and the doctors seem stumped as to what is wrong with her.
I repeately ask about her seeing a othopedic specialist, but the doctors tell me that it is to early to deal with her scoliosis. They say she will be evaluated at a later point. When is later?? I have read that the only way to deal with congenital scoliosis is through surgery. How old does she have to be to look into this. They did an MRI of the spine and they just tell me that her scoliosis is severe, but thats all.
I just know that she is getting worse instead of better, and I do not know what I should be asking the doctors or what to expect. Anyone with suggestions, please contact me.
Many, Many thanks. Gradmom of triplets plus one older brother.

[CHRIS WBS]

Hello Grandmom and congratulations on the birth of your triplet grandbabies. I’m so sorry to read that this little one is getting off to such a rough start. There have been discussion threads here on infantile scoliosis. Here’s one. http://scoliosis.org/forum/showthrea...tile+scoliosis

Hopefully others who have experience in this area will chime in with some good advice for you. Take care. Chris

[Snoopy]

Hi Grandmom,

Welcome! I'm assuming your daughter is on the East Coast since your granddaughter is being treated at DuPont. I would suggest getting her evaluated at the Shriner's Hospital in Philly. MariaF. will find this post sooner or later and she is very helpful with everything involved with Shriner's in Philly.

Good luck and congrats on the triple blessing!

Mary Lou

[mariaf]

Hi Grandmom,

And Hi Mary Lou (I guess I found the post sooner rather than later - LOL!)

You'll see some contact information for Shriners in my signature - just makes it easier and more accessible - my son has been going to Shriners for over 5 years and had surgery there in 2004. The care he has received has been nothinig short of excellent. They see a LOT of infants and younger kids with scoliosis, not just the typical teenage patients.

I also hope that Carmell finds this post (I will shoot her an e-mail) because she is a wealth of information on lots of things but specifically congenital scoliosis.

You have a lot of us who will all share our different areas of experience - you are NOT alone!

Best regards (and congratulations!)

[Carmell]

Welcome from me too.

DuPont hospital is a GREAT place, for most issues. CHOP tends to be less "friendly" with the staff, but has very good orthopedic surgeons. I wonder if you could get a consultation with Dr. Flynn or one of his colleagues at CHOP? They would need to know her full medical history (which is loaded, I'm sure).

If the MRI shows the scoliosis is severe, then yes, surgery will likely be the only option. However, she is WAY too young to have MAJOR spine surgery. Even in healthy, full-term babies, they like to wait until at least 2yrs old before doing any kind of surgical intervention. I'm sure she has pulmonologists and other specialists checking her out. Have you (or her parents, or both) sat down to coordinate the care she needs with all the specialists? Hopefully they can see the big picture and help explain to you the reasoning for their recommendations.

Background on me... my son (now 13yrs old) was born (full-term) with congenital scoliosis. By age 9 months old, his curve measured 75 degrees (severe). At age 11 months old they fused the curve so it would not progress. Surgery was successful, but caused other problems. His torso is now significantly shorter than it should be (fusing the spine stops vertical growth of the bones in the spine) and his lung function is only 42%. However, his body compensates very well and he has never needed oxygen supplement at home. At age 6yrs old he had two adjustable rods (VEPTR) placed to support the spine (lower spine was beginning to curve) and open his chest. Had this VEPTR procedure been perfected when he was an infant, he would have had an even better outcome because he would have avoided the fusion.

Lots of information to gather. I saw that you joined the Congenital Scoliosis Support group on Yahoo. You will find many more parents on that list who have similar situations. My best to you.

[grandmom_of_4]

Many thanks

I want to thank you all for your input. Carmell, you helped me to understand about why they haven't brought in an orthopedic surgeon. No one had explained to me at what age she would have to have surgery and that it would be much further down the road. Again, many thanks.
Susan