Re: Question - Carmell

[Guest guest]

Thank you for responding

Grace was prenatally diagnosed with an Omphalocele (basically a hernia at the

umbilical cord, the hernia contained her liver and gal bladder). During her 9

day NICU stay (very short for this condition btw, so she is already our amazing

Grace) they ran her through every test imaginable. One of which was x-rays

prior to her initial surgery at 24 hours old. During this x-ray they discovered

a hemi-vertabrae (triangular shaped in her rib-cage area) and an additional full

vertabrae. Nothing was done or recommended at that point but they did schedule

us a follow-up with the pediatric orthopedist at about 6-7 weeks old.

Grace's omphalocele repair went smoothly. Her rib cage is slightly different

shaped because the liver was involved and wasn't where it should be to encourage

the ribcage to grow as it should in-eutero. Nothing else was effected. Her

heart is fine, diaphram is fine, etc. She has pretty much lived a " normal "

child's life so far and hit her developmental milestones pretty much on time.

They used mesh to close her abdominal wall initially but at 14 months old, they

again went in and removed most of the mesh (leaving a small piece near her

diaphram as she had no muscle there to work with) and closed the rest of her

muscle over the hernia and created her a pretty cute belly button in the process

Her paper work says she has congenital scoliosis. Her first x-rays with the

orthopedist showed a curve of 23%, she has had repeat x-rays every 3-4 months

since and each time the curve adds a few %. At her routine appt last October,

we noticed that she was starting to twist (above the hemi-v. and in the opposite

direction below the hemi-v.). At that point he said that we will contine to

watch it, but since it appeared to be evenly twisting at that time, we were

still looking good for not needing to do any intervening. Her last appt. was in

February. Her curve is now 32% (standing and laying down). The lower spine

below the hemi-v. is curving significantly to compensate. She had been falling

periodically after what appeared to me (the one watching) to be some sort of

back spasm. I have only seen it happen once again since that appt. and only a

few times before. But we have an MRI scheduled this Monday to make sure her

spinal cord isn't being pinched, etc. She has

her next routine appt in June. Her Dr. said at the last appt., that if the

curves above and below the " defect " are the same or worse, we will be needing to

discuss having surgery probably sometime this summer.

When Grace was first seen, I asked what, if anything, would ever be done if

the curve got worse. Her Dr. has always said that it is a " simple fusion " , his

only details were that they go in and fuse each side of the partial bone to keep

it from growing any more, but that the rest would be fine. He didn't mention

any thing else about fusion surgery. I have been reading up more on fusion

surgery now, and it doesn't seem so " simple " to me. What I've read says it

consists of doing a bone graph, a hospital stay of about a week and wearing a

brace or cast for up to 3 months until the fusion " takes " . None of which he has

said anything about.

So, I'm scared. Scared to do the wrong thing at the wrong time. Scared of

not doing what is best for my daughter. I don't care about the cosmetic

portion. She will always be more aware of her looks because she already wears

her tummy scar with pride (she'll show anyone her tummy who asks, lol)

I have Kaiser insurance. In our area, there are only 2 pediatric

orthopedists. Yes, we have a Shriners, but I am sure that my husband and I make

way more than what is allowed to receive support from them and we can't

financially foot the bill for independent medical appt's for this.

Again, thanks for the advice in advance.

Jane and Gracie

Carmell Burns wrote:

Hugs to you, Jane,

Casting and bracing are not effective treatment for kids with congenital

malformations of the spine (ie, hemivertebrae, unilateral bar, unsegmented bar,

etc.). If the doc is referring to congenital scoliosis in Grace's case meaning

she's had scoliosis since birth, that may be a different story. Does she have

any bone malformations in the spine? If yes, then casting/bracing wouldn't

likely be helpful. You can't externally support a spine that wasn't formed

correctly in the first place.

If the docs are talking surgery, what are they suggesting specifically? I've

read several new stories lately and I'm not sure if I know Grace's full story

yet (sorry to be a PITA about this). Her birth defect was very serious. I'm sure

her structural stability is affected by this. Do you know if she has the muscles

she should? Does her diaphragm function correctly? All of these things, and

more, should be addressed before deciding any treatment. There are several

treatment options out there (unlike several years ago when fusion was the only

treatment). Getting multiple opinions for kids like Grace is very important. If

you ask the same questions to multiple surgeons, you will get a variation of

each question. No two surgeons are alike, as no two kids with scoliosis are

alike. Each requires unique care, and should be treated by someone who has

extensive experience successfully treating children with similar conditions.

Lots of rambling, but I hope some makes sense.

Good luck!

Carmell

Mom to Kara, idiopathic scoliosis and hypothyroidism, Blake 17, GERD, and

Braydon 12, VACTERL-congenital scoliosis (fusion surgery 5/96), VEPTR patient

#137 (implant 8/01), Thoracic Insufficiency Syndrome (TIS), rib anomalies,

missing coccyx, fatty filum/TC (released 4/99 & 12/06), anal stenosis, chronic

constipation, horseshoe (cross-fused) kidney, dbl ureter in left kidney,

ureterocele (excized 6/95), kidney reflux (reimplant surgery 1/97), neurogenic

bladder, dysplastic right leg w/right clubfoot with 8 toes (repaired 2/96, 3/96,

1/97, 3/04), tibial torsion, 4cm length discrepancy-wears 3cm lift, valgus

deformity, GERD, Gastroparesis, SUA, etc.

http://carmellb-ivil.tripod.com/myfamily/

Congenital scoliosis support group

http://health.groups.yahoo.com/group/CongenitalScoliosisSupport/

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