Ian scheduled for surgery

[Ian'sMom]

Hi:

My son Ian is 2 years old and was diagnosed with Congenital Scoliosis in January of this year. We are from NYC and have been to Morgan Stanley Children’s Hospital of NY Presbyterian / Columbian University Medical Center and NYU Hospital for Pediatric Joint Diseases. Now we are with the Shriner hospital in Philly working with Dr. Betz. We had an appointment yesterday and Ian’s curve has progressed from 30% to 38% in the last 4 months. They suggested that we come back in December to check if his curve has progressed. If so, we are scheduled for the VEPTR surgery in January. Has anyone’s child had this surgery? How was the recovery and now has your child been able to go back to his/her activity level prier to the Sergey?

Any input will be helpful.

Ian’s Mom
ninanorwood@gmail.com
Ian / 24months /Congenital Scoliosis
2nd. Baby due in March

[Carmell]

Hi Nina,

How adorable is he!!! What a charming guy. I'm sure he knows how to use his charm too. How can you not kiss those cheeks!

My son, Braydon, is now 12yrs old. He has had VEPTR implants for 6+ years. He is doing VERY well. His quality of life has improved and remained excellent. I'll email you with details about our experience. You are in GREAT hands with Dr. Betz and his team in Philly. If Ian needs VEPTR surgery, that's a great place to have it done. More than the surgeons skill, the hospital post-op care is very important. You want to be where they know how to take care of these kids, and know what complications (if any) to watch for. Braydon has never had any complications. He has done remarkably well. It is a huge surgery, and a huge committment from the family and the surgeon both. However, the quality of life improvements are well-founded, in Braydon's case. I would dare bet Dr. Betz is considering VEPTR to maintain optimal lung function. There are several new studies recently documenting early fusion patients and their poor lung function as adults. Not my idea of fun.

My best. I'll email soon. Or, if I forget (senior-itis may set in) email me at boulderfam@hotmail.com

[flowerpower]

Just wanted to send good wishes for the best outcome for your Ian. He is absolutely adorable!

Renee

[mariaf]

Nina,

I'm in love with your son already - he's SO cute!!

I can't offer any advice regarding the VEPTR because my son had a different surgery (vertebral stapling) - but I am from NYC and very familiar with the workings of Shriners Hospital in Phildadelphia and Dr. Betz and his team. Ian is in EXCELLENT hands (understatement).

That being said, I'd love to support you in any way I can. Please feel free to e-mail me. I'd also be happy to chat with you by phone. (I'm in Queens).

Hugs,

[laurieg6]

Ian is totally adorable & you are probably very stressed worrying about him, especially since you're pregnant & hormonal. You can find lots of support on this forum so don't hesitate to ask any questions & let people know how you're doing. I heard of a new VEPTR support forum (I know someone else will tell you about it) if Ian ends up needing that surgery.

My son has been able to live a very "normal" life with congenital scoliosis -except for the medical appointments, his brace from ages 8-11 & his recent surgery. We've known about his hemivertebrae since birth but he wasn't diagnosed until he was about 5 yrs old. If you have any questions, I'd be happy to try to answer them.

Good luck with everything!

[mariaf]

Hi Nina,

I sent you an e-mail and was wondering if you got it. Basically, I'm happy to support you in any way I can. We, too, are from NYC and Dr. Betz is my son's doctor as well.

Best,

[Ian'sMom]

Thank you all for your kind words. It’s good to know we are not alone and there are other families going through this and have worked with Dr. Betz and the team at Shriner. Janet the PA gave me the website for the VEPTR support group, www.veptr.com They want to give him the VEPTR to so his chest will grow the same on both sides. This will make his shoulders level. It still does not address his spine issue. Right now he has no pulmonary issues but, they say the longer we wait Ian his bound to have some because one rib cage is a third smaller than the other.

The Lord never gives you more than you can handle but, boy oh boy, I wish he didn’t test me on it (smile). I’ll keep you posted.

[Carmell]

Hi Nina,

I didn't email you like I said I would... have had a busy weekend.

There is a great messageboard at the VEPTR.com website. You'll find lots of families who have VEPTR experience. You'll also find that each child is very different. There is a wide range of medical issues involved. Some kids (like my Braydon) are fully functional and have no physical restrictions. Some kids are wheelchair bound and are ventilated. However, the VEPTR procedure has improved (or maintained) the quality of life for these many children.

You mentioned that you were told the VEPTRs for Ian will not address his spine. This is not completely correct. If the docs are going to place chestwall only rods, then the spine will not have support. This would make the statement true. However, my guess would be that they could place a spine stabilizing rod (like Braydon has) to offer support to the spine and help improve the scoliosis. I would be very surprised to hear that they don't address the spine at all. Even if they do a chestwall only device/rod on each side, the spine is attached to the ribs. There will be some correction/support naturally because of the dynamics and anatomy of the spine and ribs. Have you seen any before and after xrays of these VEPTR kids? There is a photo album on the VEPTR.com website. Take a look at some of the kids. Some of the images are stunning. You can't tell its the same child. Zachary is one who has an amazing correction.

I'm sure you have lots of questions. Let us know if we can help answer any.

My best,

[kerina313]

I wanted to welcome you. I don't have much experience with VEPTR as of yet, since my daughter is only 17 months and they don't want to do it until she's 2.

I do want to comment about Dr. Betz & his staff at Shriner's Hospital, however. My daughter was born with a heart condition & cysts in the kidneys (only 2/3's of one is working) along with her congenital scoliosis. For the heart & kidney we ended up at Children's Hospital in DC. We were very happy with the heart & kidney staff there that we decided to go with the orthopedic area as well. Figuring since they're in the same hospital - they should communicate more easily.

We stayed there over a year and the closer we got to actually doing the VEPTR procedure the less comfortable I was with the doctor. She kept treating Emily as if the back was her only issue. At the very end she kept talking about fusing parts of her spine. It was then I made the decision to see if we could be seen by Dr. Betz. We wrote to him explaining our situation and within 2 weeks we were able to get an appointment.

Within that appointment, Janet & the other staff were so nice and acted like Emily was their only patient. Dr. Betz came in and explained a reason for fusing had Emily's situation been different. He even knew of the term VATER/VACTREL and asked if she had any of the other "known" issues. Right then and there I knew I had made the right decision. The fact that he knew the pieces of VATER/VACTREL meant he had dealt with others like Emily.

We have an upcoming appointment again (it's been 3 months) and we'll see how "bad" her curve has gotten in that 3 months. At our last appointment she had a 73 degree curve. Because of where her hemi vertebrae are, we'll be doing the bi-lateral VEPTR. Just right now I'm juggling what surgery will come first. Emily's conduit for her heart is narrowing again and the cardiologist is looking to dilate the stent if possible. If that all works than we'll be on for the VEPTR when she's 2. If not, we'll have to postpone until after her conduit replacement surgery. With only one working kidney - I try to space things out.

We had a nice surprise the other night - a local chapter of the Shriner's has offered to take us to and from our appointment. We only live 3 hrs away. After spending so much for the heart/kidney appointments in gas, parking, etc, it was kind of a godsend.

I can't talk about the recovery time for the VEPTR - since Emily hasn't had it. But I do know with her heart surgery we have to give it at least 6 weeks to heal. It is amazing to watch the healing process in kids. They actually heal much quicker than adults!

I do suggest as time draws nearer - you ask a lot of questions. I know I'm interested in approximate recovery time. I'm also interested in what kind of support she'll need sleeping and for the carseat. I'm curious as to any PT she'll need. I'm also concerned with her just walking - will that be hampered? I'm also curious as to what the schedule is for staying with your child after surgery. Each hospital is different.

I would suggest that if you've never had your child in any type of surgery - you get a real basic of what to expect when they come out of surgery.

I know when Emily had her heart surgery one of the ICU nurses kind of gave us a heads up as to what to expect. Of course when she came out of surgery her care nurse was explaining as well - but it helped hearing it before the emotions really hit. Which they will.

As far as the people here - they are wonderful. You'll not find a more supportive group of individuals whose commonality is the spine but they may also have other issues. They are also great in answering questions.

[kellybensmom]

[QUOTE=Ian'sMom;49192]Hi:

Hi Ian's Mom,
my son is 3 and has severe congenital scoliosis. I'm looking for different options for his treatment. Could you tell me why you didn't get Ian's care from Columbia Univ MC / NY Children's Hosp? How has it been to live with the VEPTR? Do they have to replace the rods periodically? How often? I'll send the same message to your email, since this thread is a few years old, I'm not sure if you're still on this site. Thanks, Kelly.

[jrnyc]

a note...the thread was started in 2007...is there any
activity from the original writer...??

jess

[mariaf]

I don't think so, Jess.

Kellybensmom - if you would like to e-mail me (see address in my signature), I will try to connect you with some parents and/or groups dealing with scoliosis in very young children. (My own son was diagnosed at a young age as well). One group comes to mind is the infantile/casting site, but I am not sure if casting could be an option with congenital scoliosis. I will also try my best to give you info on any doctors specializing in infantile scoliosis depending on where you live.

Best of luck.