Questions about surgery

[Lucy's Mom]

My daughter Lucy sustained LBPI at birth and we are in the process of deciding what doctors to work with in doing surgery. Has anyone worked with Dr. Julia Terzis at the International Institute for Reconstructive Microsurgery? Also, has anyone's child been under anesthesia for as long as 18 hours? I'm really struggling with this decision because I want to do the best thing for my daughter but it really worries me that she will be under anesthesia for so long. If anyone can offer me any insight I would greatly appreciate it.

[Lucy's Mom]

I forgot to add that Lucy is 7 weeks old and by the time of the surgery we have tentatively scheduled she will be 11 weeks old.

[brandonsmom]

My son was under for 10 hours and came out of it bubbly and happy. He was more resilient than me and my husband !!!

[BIGJAVSMOM]

Lucy's mom- when Javier had primary surgery with nerve grafts, he was under for 10+ hours and he too came out smiling. Quite puffy, but smiling all the same. Babies and kids are much more resilient than we are. Good luck with surgery and to ease you mind you can make a well baby check with the pediatrician just before surgery. We did that only because of Javier's older brother being in school and bringing home germs and it was in February. Also, the doc's will keep a close eye on Lucy before and after, so don't worry too much. I know it is hard, but it TRULY is harder on us than them.

Marlyn

[TNT1999]

Hi, Carol. I'm very sorry that I didn't reply sooner to your post. I wanted to check our surgery notes and didn't get back here to reply. SORRY! Anyway, I agree with your concerns and I too feel that 18 hours is an extremely long time for an 11-week old baby to be under anesthesia. Our daughter was late in having primary, she was 10 1/2 months old, and she was under for about 5 hours. If I recall correctly, they (TCH) told us that they wouldn't know how long the surgery would take until they got in and assessed the damage, but that it would be up to about 10 hours. I noticed that the other replies you got too were about 10 hours. Well, I think that's a lot different than 18 hours. I know that anesthesia is one of the biggest risks in having surgery and I too would be really worried. Has Lucy ever been under anesthesia before (for an MRI perhaps)? Have you gotten a second opinion from another BPI Specialist? Have you discussed why the surgery takes so long? Is it perhaps a training situation where they're teaching other residents while working on your baby? If so, I would demand that this not be done in her case. This is also very young for surgery in general? Does your daughter have any movement at all in her arm / hand? I don't mean to worry you further, but I do want to acknowledge that I think you have some very valid concerns.

I'm also surprised that no one else replied that they think that 18 hours is a very long time for an 11-week old baby to be under anesthesia. Any other replies here? Am I really the only one here who shares Carol's concerns? Please help Carol and provide some input here. I'm going to e-mail you too in case you don't check back here and see this reply.

~Tina, bpmom@comcast.net, Mom to Nicole (6 y.o. w/LOBPI) & Joshua (1 y.o. w/NOBPI)

[Ginne]

Melissa was 11 weeks old when she had her surgery and was under for 13.5 hours. She had the surgery on a Thursday and was released from the hospital on Monday. She had to be off oxygen and able to breathe clearly on her own before she was released. They actually kept us for an extra day just to make sure(well they had to, she had her surgery during the height of the SARS outbreak/scare in Toronto).

One of the mothers in this area (hiya Holly...quit lurking and say hi to the nice people (LOL))had her son under for almost 17 hours I do believe - same doctor, same hospital, more nerves damaged - and he recovered fine and was actually released in fewer days!!

We were originally told that it could take up to, if not over, 17 hours. they like to give themselves that extra time to make sure that it is done right. Don't be afraid to ask why so long and if this is the Dr's average or maximun time.

Good luck!

Ginne

[TNT1999]

bump in hopes that Carol will see this -- Carol, I tried to e-mail you, but it was a work e-mail and I got an auto reply that you're on leave. ~Tina

[Grandma Lou in NH]

Hi, I am so sorry to hear about your daughter and the potential long----- surgery. I would strongly suggest that if you have not had a 2nd or even a 3rd opinion to do so ASAP. I am also mentioning the following, once again, in case you do not know,Some BP specialists even do evaluations if you send them a video tape.Best wishes, Lou

[ChristinaSanta]

My daughter had surgery when she was 10 months old. She was in there for 8 hours and I was soooo scared. There is nothing you can do to make this feeling go away. I cried before they took her and I cried when I saw her again after the surgery. There is no sense in people telling you that it will be easy or ok. It was the hardist decision that I have ever made in my life. Destiny has a scar all the way down her neck and onto her shoulder. She has 4 small incisions on her right leg that they took the nerve's from. It is not easy to see your child like this. I kept it in my mind that I was doing the best for her. She is now almost 2 and I can see a little improvement. She still is very limited to what she can and cannot do. Surgery is not a quick fix and sometimes I regret putting her thru all that pain for just a little improvement. I hope as she gets older that she will be able to use the arm more. If you want to talk more, please email me.

[Lauren (Brooke's mom)]

Tina,

I absolutely second your sentiment about that being too long of a surgery for an 11 week old. Usually the surgeries aren't done this early. Around three to four months is usually the earliest. IN MY OPINION 11 weeks is too early to determine if a child needs surgery or not. Regardless of the extent of the injury the clinical picture is the same at birth-there is no movement. Nerve function slowly gets better with time. A determining factor for surgery is usually that if a child cannot get their hand to their mouth by three months surgery is scheduled immediately. This is what happened with my daughter and she ended up still not needing the primary once she was in surgery.

Has your child had an MRI done? Do they know there is an avulsion or rupture issue? I guess what I'm trying to get at is why they think surgery must be done asap.

I do want to validate your concerns as I would have the same ones. Have you gotten second and third opinions? If not, I'm sure everyone here would be glad to give you names of a few specialists to check into.

Good luck with your decision! Feel free to e-mail me anytime!

Lauren
(Brooke's mom 8 months LOBPI)