United Brachial Plexus Network, Inc.

Hi

My son was born 12 years ago and sufferers from BPI due to a traumatic birth. Back then he was never a candidate for any of the few surgeries that were being performed. With years of therapy my son has learned to compensate by using his other arm for any task that was impossible. He is finally a candidate for the triangle tilt surgery performed by Dr. Nath in Texas. I am so thrilled that after so many years my son will be given back what was taken away at birth. We are scheduled for surgery this month. Does anyone have any helpful hints?
Always have hope!
Tina

Hi Tina,
My son is 8 and was born with a ROBPI. He didnt have his first surgery until he was 5. He had a lot of function return however Dr Nath thought the TT would be perfect for him. After much deciding what to do, we decided to do the surgery. We thought he was looking great and had a lot more functiong then he did after the mod/quad, capsulodesis and a bicep lengthening. So last year we did the TT and are very happy with the results. When we saw Dr Nath in the satelite office he has in NJ this past July, he was very happy with the recovery and function that James has had.
I can only say that it is a personal decision and that every child is different depending on the degree of the injury, but we are so happy that we went ahead with surgery.
As far as helpful hints, I am not sure what part of the country you live in but as far as clothes, we bought clothes that were 3X the size as my son and draped them over his arm and then buttoned them. We used some of my husbands Tshirts for him to wear and we used sweat pants so that he would not have a hard time going to the bathroom on his own.
Good Luck
Elisabeth Mahoney, mom to James ROBPI

Hi Elisabeth,

Thanks for responding its comforting to know that there is so much support out there. I'm glad to hear your son is recovering well. We live in the neighboring state of NJ so I will take your advice and purchase very oversized t-shirts and as for winter clothing the splint should be off before the cold weather arrives. Did your son stay indoors for 6weeks? Was he able to partake in any activites?
Tina Larsen

Tina,
James had his surgery in March, so there wasn't much he could do up here in NY during the winter, but once the spring came he was out and about, even with his splint, he was playing with friends and he even figured out how to play playstation and xbox. Whe had a golf party for him for his birthday while he wore his splint and he played with one hand.
He is, and always has been, very active.
Your son will be able to make accomodations to work for him
If you have any questions let me know
ELisabeth

Hi Tina. My daughter Vallen just had the TT 7 weeks ago. She just turned 8 last Monday. Our overall experience was fairly good. She was bored out of her mind for 6 weeks, and HOT! We live in Vegas and that big splint in 120 degree weather is NOT fun. So we went to Idaho to stay with my Mom for a couple of weeks. We did LOTS of crafts. Anything that we could do that involved sitting. We went fishing, for long walks, and she sat her butt in the lake (although she was more bummed after because she couldn't swim) My best advice is to take the splint off in water. It really helped. Also, don't be discouraged when you first take the splint off and his arm is very limp. It gets strong FAST! She is already doing so much and the splint has only been off a week. I was amazed. I think the biggest issue for us was her skin. She has pretty sensitive skin, so to be confined for 6 weeks with no bath was torture. She would wake up in the middle of the night itching. We got creative! But oh so worth it in the end. I am very happy with the outcome so far, and I know it is going to get better. Also, we really loved Memorial Herman's Hospital. Vallen had her prior 3 surgeries at TCH and so I was feeling a little anxiety about MH. But it was fantastic! I liked it much better than TCH. Also, Dr. Nath has such a wonderful caring bedside manner. He has done all of Vallens surgeries and I love him more each time.You can tell he truly cares about our children. He sat in Vallens hospital room with us and just talked for about an hour. He is wonderful! So that helped. Please feel free to email me if you have any more questions.
Good Luck to you
Raina

Raina

Thanks for the helpful information. I am so glad to hear your daughter is improving daily... keep me posted on her recovery. Mark is really sad because he knows for quite some time he wont be able to participate in lots of sports he has been playing and to keep a 12 year old active boy indoors is hard. I feel so bad for him and it breaks my heart but I know when he is able to turn his arm (supinate) It was worth it. I'm glad to hear so many wonderful things about Dr. Nath and all he is doing for these children.....Please keep in touch...Tina

Tina,
Although my son was not able to play formalized sports, he was out there still hitting the ball with his left arm, he wouldnt run the bases, he would walk and learned how to fake out his father. He played soccer, in our backyard, but kicked the ball around with his friends. He learned how to play playstation one handed and even put the controls inbetween his feel when he was desperate to make things work fast.
He was very stiff after coming out of the splint but 6 weeks after he was out of the splint during the day, he tried out for the town's soccer team and made it. I checked things out with Dr Nath and he approved of what we were doing. The recovery he had was amazing and the supination and strength that he had after the surgery was just as encouraging.
Good luck with the surgery and the results.
Elisabeth