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Member
Posts: 16
Location: Saskatchewan, Canada | Hello, my daughter, Abby was born with congential scoliosis, fused and missing ribs, 3 hemivertebrae, exposed spinal cord (internal exposure only), a missing left kidney...all of which has resulted in thoracic insufficiency syndrome. She is only 16 weeks old and has had pneumonia twice. She had a g-tube inserted and has been having trouble bouncing back from the surgery but seems to be doing well now. Her carbon dioxide levels are quite high, her normal seems to be between 60-70 but ph levels seem to be balanced. Her curve is already at 72 degrees.
I have tried to educated myself the best that I can but am finding it difficult to find information that is similar to my daughter's issues at such a young age. Most of the information I have read is more geared towards toddlers and not infants.
I'm just wondering if anyone else has experienced the thoracic insufficiency at such a young age with their children??
Dani |
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Member
Posts: 10
| well i found out my daughter had this syndrome when she was 4 months old but she just had the surgery 7-29-2010. She is three. We are in the hospital right now while she is recoverying. i didn't know much about it so what I did was type everything she had in yahoo and research it. my daughter has scolosis and fused ribs abd she had a tethered cord and they did it all in one surgery. I hope everything goes well for Abby. i'll be praying for her. Did you docto give you information on everything she has. i've come to learn if you go on facebook and type it in too you get alot of information and you find people with similar stories. good Luck. |
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Member
Posts: 16
Location: Saskatchewan, Canada | I have done tons of research and have had some great doctors explain her diagnosis. I'm wishing your daughter a smooth recovery. |
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Extreme Veteran
Posts: 557
 
Location: casper wyoming | Hello,I found out about my sons conditon when I was about 17 weeks pregnet,he was born with multibale hemmi vertbra,fused ribs,thoratic insuffancy syndrome,and a lot of other.He had his first veptr when he was 18 months,he is now 6 years old and doing wonderful,its a verry long road but,the people on this website are the greatest support and Iam sure there will be many more on here to welcome you and give you advise and comfort. |
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Member
Posts: 16
Location: Saskatchewan, Canada | Hi Michelle, How did your son do up until the surgery? Did he have to have any breathing support?? We are crossing our fingers right now that Abby will be able to manage with CPAP at night only and oxygen during the day but seems to be getting one lung infection after another so have had many set back. And thank you for sharing you're story. |
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Veteran
Posts: 167
Location: Phoenix, AZ | Hi Danni.
Welcome to the site. My son Carter is 17 months old now, but we found out while I was only 18 weeks pregnant that he had hemivertabrae. After he was born, he had to have three surgeries to correct imperferate anus (missing his anus). We then had to have one surgery for his spina bifida... fatty filum terminale. Carter should be getting his surgery in October. Carter was born with fused ribs and a 54 degree curvature which has rapidly progressed to 84 degrees. He also has a couple of heart conditions.
Everything is a bit of a blur the first week of Carter's life; he had surgery, I had surgery and was on pain meds... so they may have said something even at the hospital, but I know for sure that at our first meeting, about a few months after Carter was born, we were told that Carter had thoracic insufficiency syndrome at that time. He also just had a pulmonary function test a couple of weeks ago that shows he is only breathing at 55% of what is expected. I am telling you this because Carter walks, crawls, and full out runs, even though he has been labeled with TIS and such a low lung functioning. If you want to read more about Carter, you can go to carepages.com Then search under littlen8tive.
I think finding a physician that you really feel comfortable with is essential to help put your mind at ease. Has your ortho surgeon discussed when they want to have the initial implant surgery? I will keep Abby in my prayers. I'm glad to hear she is doing well know.
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Member
Posts: 16
Location: Saskatchewan, Canada | Thank you so much Kristy. I read Carter's story and it does sound very similar. Did he ever need breathing support?? Abby keeps us on our toes, she's bounced back from her surgery now and it looks like she may be coming home with oxygen during the day and CPAP support at night. I can't believe how resilient kids are...and boy am I thankful for that!! |
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Elite Veteran
Posts: 1127
Location: Vancouver, Canada | Hi Dani,
You are in good company here. Our children all have difficulties when they are very young. Then they keep us running to keep up! |
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Veteran
Posts: 167
Location: Phoenix, AZ | Hi Danni,
No, Carter has not needed assistance with breathing. Hopefully Abby won't need it for too much longer. I'm glad things went so smoothly. It seems like you have had a pretty short stay for the surgery. :0) |
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Member
Posts: 16
Location: Saskatchewan, Canada | We are off to Edmonton at the end of the month to discuss options for Abby with the surgeon who will perform her surgeries. I am really looking forward to hearing what he has to say. It's my understanding that our ortho surgeon closer to home has already to spoken to the doctor in Edmonton and he feels that Abby will require her first surgery between 6 and 12 months. Not sure what that surgery will entail but we are hopeful it will offer her some improvements. Thanks for you support everyone! |
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Regular
Posts: 56
Location: Monument, CO | Hello!
I think that we have a lot in common, although years apart. Our Abby was born with cong. scoli, multiple hemi vert, fused vert and fused ribs. She is now 9 years old, and, unfortunatly, we did not know about her issues until she was dx'ed with cong. scoli. at 3 months. She was dx'ed with TIS by Dr. Campbell at 9 months. She progressed rapidly, through many doctor visits while we debated what to do (VEPTR was still experimental/investigational at the time) and had her implant surgery at 17 months of age - she had a 94 degree curve at the time. Abby has never needed respiratory support, although her PFT's measure at about 65-70%. We are really pleased with this, though, as she breathes 65-70% of expected while we live at 7200 feet altitude.
After 17 surgeries with Dr. Kit Song in Seattle, WA, Abby is now a very well adjusted 4th grader. She runs, jumps, swims, plays and does everything else that her peers do. Sometimes it takes her a little longer to do them than others, but she has never let that slow her down. New people in her life (teachers, church members, etc) are always very shocked to hear about the surgeries that she has had as she doesn't look like there is anything wrong with her - only if you see her in a swim suit and see her scar and rib hump.
Anyway, I will keep your Abby in my prayers as well as your family. This can be a very scary time. Give her a big hug! Don't hesitate to contact me if you have any other questions. I'm more than happy to talk and listen. |
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Member
Posts: 23
| Hello. We found my son's scoliosis while he was in utero. He was born as a preemie at 33 weeks. He has congenital scoliosis with fused ribs on the left, missing left kidney and missing left humb. He has had feeding disfuction due to laryngomalasia and because of his rapid breathing from his scoliosis. He is now 8 months old and his curve in March (3 months old) measured at 80 degrees. He too just had a g-tube placed and it has been a rough recovery. Luckily his sleep studies look pretty good still as far as his carbon dioxide levels go. We will be seeing Dr. Campbell at CHOP at the end of October. We have seen Dr. Sturm in Chicago and he would ideally like to wait for surgery till Myles is 2, I don't know if his curve will allow that. There is an option, I think, for babies who need the surgery to place the smaller rod now to halt the curve and then when he is older, place the second rod. We will see when we talk to Dr. Campbell. I hope you find some answers soon. My advice, be very pro active on your child's behalf. It is hard for me to be pushy, but I am learning that's what it takes with insurance companies and doctors offices. Good luck to you.
Brenda |
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Member
Posts: 11
| my son has the same as yours i think. he is 14 mounths now. we are having our first veptr before he turns 2 years old. i wonder how things will be after this surgery!?! will hes scolioses be better or worse? he is maybe 55% right now. i hope you will tell me how things goes for you.
wish you the best.
-camilla- |
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Member
Posts: 16
Location: Saskatchewan, Canada | We just got home after meeting Dr. Hedden (Edmonton, Canada) who will be doing Abby's first VEPTR surgery when she is about 8 months old. Because her curve and other issues have created Thoracic Insufficiency Syndrome they feel it will be a great benefit to her lung growth to do the first surgery as soon as possible. We'll be traveling back to Edmonton to have some more sleep studies done and meet the rest of the team that will be involved with her surgery. Dr. Hedden said it'll likely be the VEPTR II that is inserted as it is quite small and Abby is only 9lbs 7oz right now. He did mention there is a weight requirement before doing the surgery but needed look into that further so I'm not sure what the weight requirement is. Does anyone know?
We are very excited to go ahead with the surgeries and see how it will help out little girl!
Dani |
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Member
Posts: 10
| Hi Dani!!! My daughter Bella was born with jarcho levin syndrome, as a result has tis Her lungs are less than 25% of the size that they should be. She's 7 months old and just had Veptr surgery a few days ago. She's the smallest and youngest to have the surgery to date she currently weighs 6.4 Kilos (12.5 lbs) and she's about 20 inches long. The surgery was a success and Dr. Campbell was able to literally double her right chest cavity! H'e absolutely amazing! they placed the veptr laterally not along the spine being that her spine was not yet long enough for the device to fit. She'll have the other side placed in 2 months. And once she's bigger we'll move then closer to her spine.
Sheyla |
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Member
Posts: 10
| Good luck with your appt!!!  Prayers and blessings your way!!!!!! |
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Member
Posts: 10
| Dr Campbell had told us that the weight requirement was about 6 kil, 12 lbs |
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Elite Veteran
Posts: 971
Location: nixa mo | Hoping all is well keeping Abby in my prayers. |
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Expert
Posts: 3970
Location: Plymouth, Pennsylvania | LOTS OF THOUGHTS AND PRAYERS....GOD BLESS... |
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Member
Posts: 16
Location: Saskatchewan, Canada | Wow, I am so so glad to hear that Bella is doing well. Thank you very much for the info on the weight requirements. Abby is so close to 10lbs right now and we are doing everything we can to fatten her up!! ha ha My thoughts are with you and Bella. It's going to be a very long road for both of our girls and I look forward to getting to know you along our journey. |
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Abby's Story
