Primary Surgeon Recomendations

[RyansMom]

Please help! I'm a brand new mom with a beautiful 8 week old who has bpi. I am completely overwhelmed with the quick decisions we must make. Dr. Hentz from Stanford has said that surgery will be recomeneded in 30 days, if he isn't lifting his arm and using his bicep at his 3 month birthday. Obviously, I respect his opinion, however, my husband and I must get some other opinions, on something so critical. Please advise! There are sooo many surgeons listed on the websites. Please give me the good, the bad and the ugly. All information is so very much appreciated!
Thanks in advance!
Ryan's mom

[Francine_Litz]

Hi Ryan's mom,

Sorry to hear that your little one was injured. It's always bittersweet to welcome a new mom to the message board.

I wanted to let you know that there is a section on here that has a lot of good information for you to read. You can start with the homepage... Information for New Parents on the right side. Then if you click on anything Awareness on the homepage, then click on resources - there you will find numerous articles that will be helpful for you.

As far as a doctor for a 2nd opinion - we take our daughter to Texas Children's Hospital. Dr. Nath is Maia's surgeon and we would highly recommend him. His email address is rnath@bcmtmc.edu and his personal website is found at www.brachialplexusinjury.net. Maia has had 4 surgeries with him adn we are very pleased with his work and also his personal nature.

I have documented our whole experience at www.injurednewborn.com - look for the link to Maia's site.

I'd be happy to help in any way I can.
God bless your little one,
francine

[tcon]

Get a 2nd opinion!!! We were told last year that our then 3 month old daughter would need primary. Well she is 14mo and surgery free and most people dont even know she has an injury. I hear that if you child has some movement, then alot of drs are waiting until the 5/6mo range to do primary surgery.

Good Luck- the waiting is the hardest.

[Francine_Litz]

tcon is right.... often a child that is diagnosed at 3 months might not need it at 5-6 months.... I know that TCH will book a surgery and then when you get to the hospital you will be in clinic and if the child passes the function test, they send you home.

Earlier surgeries are done mostly for children with real deficits in the hand/wrist/fingers because it takes the longest for that to return.

[claudia]

I second the TCH mention. We took Juliana there; she had primary at 4.5 months because she had no function in the shoulder, arm, elbow, and limited function in her hand.

Her recovery (primary, mq, bicep lengthening later) is amazing.

And they do send people away if they pass the test. I love their "team" approach.

Drs. Laurent and Shenaq did Juliana's primary.

hope it helps,
claudia

[Allison]

Hello Ryan's Mom!
We have taken our son Bradley 23 months ROBPI to Texasa Childrens Hosp. for his primary at 6 months, his Mod Quad at 12 months, and we just got back Thursday from his third surgery. We are very pleased with the improvement in Bradleys arm. He had a ruptured c5,c6, and c7.
Our determination to take Bradley to Texas was based on the number of primary surgeries Dr Nath and Shenaq have done. Based on my research, they have done more primaries than any other bpi specialist in the country. They have an incredible multidisciplinary team.
I'm sorry to hear you little one was injured. We are hear for you.

[RyansMom]

Claudia,
Your daughters description sounds just like Ryans. He will hold our fingers if we put them in his hand. He can roll his wrist slightly, but absolutely no movement in arm or shoulder.
Thanks for your advice! We do appreciate it!
Trish

[admin]

Hi Ryans mom:

If you have any piece of yourself telling you that you think surgery is not the right thing then get a second opinion. When my daughter was around 3 months old we were told that she would need nerve surgery. We also just started seeing Dr Waters at this time in Boston and he said that he didn't think Ella would need nerve surgery at all, but that he would follow her progress every month until we decided. In my heart, I knew she wouldn't need surgery, but at the same time I said to myself...maybe this will indeed help her. Afterall, I gained the trust of Dr Waters and decided to do what ever he thought was the right thing to do. You should find someone who you can trust and who you believe will make the right decisions for you child. It takes a while to gain that trust, but for us, it did happen. Ella (2yrs old) is surgery free so far, but will be having secondary surgery in Jan at Children's Hospital Boston with Dr Waters.
I hope you feel comfortable with the decisions you make. That is the most important thing. You will feel it in your gut. (I know I did.)
Good luck to you!
~Krista~

[admin]

Get a second opinion if you feel uneasy. I will tell you my case. My son is now 9 months. My clinic is more reserverd so he did not have surgery until he was 71/2 months. If I would of done surgery sooner, we would of not of gotton the results he has gotton if we did surgery sooner. We all are different. My son has C5,C6, and partial C7 involvement. He will never be 100%. His only goal is to feed himself and to put his arm over his head. We are still waiting. He did improove his torticollis after 4 1/2 months and some bicept. I wish you well. Ann mom to Zak

[admin]

Ryans mom,
Hi my baby is 3.5 months. He has no movement in his shoulder, no bicep movement, he can't bend his elbow, and his wrist is bent in. He can grasp onto things well with his figures. We sent a video into Texas Children's Hospital. We were told that he will need the primary surgery at 6 months. In the mean time we'll see if he happens to get some bicep movement and possibly avoid surgery by waiting. I would definately get a 2nd opinion. Trust every doubt your feeling. I use to trust every doctor and now I've found that I have to trust my doubts and research all my options.