United Brachial Plexus Network, Inc.

For any of you thinking of Shriner's at Philadelphia with Dr. Kozin, I just wanted to share the experience of my first visit there. Most profoundly, everyone there is really, really nice. From the Security Guard that wasn't angry because I drove into the 'Exit' for the parking lot, the incredibly compassionate ckeck-in people, and the receptionists, the nurses, the cafeteria staff, the Interns, the PT staff, and of course to Dr. Kozin.... Dr. Kozin's manner with me and my daughter was superlative. To any of you thinking about secondary surgery for your child, I would highly recommend a visit with Shriner's and Dr. Kozin. The environment there really validated so many dimensions of my life and concerns as a parent of a birth brachial plexus injured child.

Also, I should add that our appointment time was very much honored. My daughter and I arrived on time for our appointment. We were moved swiftly and with utmost courtesy through all the stages of our appointment, and even after those appointed times were behind us, we were told that we were guests to the Shriner's hospital. We were permitted to linger in the hospital, to pause and think, to take lunch, and at any time we were permitted to return to Dr. Kozin or the PT staff to seek additional help or to ask other questions.

By the way, my BPI daughter of four years happens to be very intelligent, off-the-charts intelligent that I learned in recent efforts to place her under 'No Child Left Behind' for PT and OT services with the local public school system. As we drove to Philly, she was adamant that her injury 'could heal on its own.' Over the 400 miles that we drove to Philly, she repeated that maybe 500 times. You can imagine that the travel was very difficult for me, all by myself.

In the few minutes that we waited for Dr. Kozin, I was sure that when he arrived my daughter would erupt into a major protest. Dr. Kozin is really competent. He walked into the examination room in casual clothes, introduced himself to me and my daughter. Dr. Kozin took charge to examine my daughter with great, great kindness. My daughter was very secure in his arms while he and I spoke of important things. One was that she should try a splint/brace. After the appointment, not only was my daughter more open to the possibility of more use of her arm, but of using a splint, which she has used with amazing correction in the bend of her elbow.

Offered with great kindness and profound hope for fellow parents of BPI children and those children. In my expereince with my BPI daughter that had very limited or no appearance of function at nine months old, there is hope in this injury; keep your child active and unlimited in their access to physical challenges, of course within reason. To this day, I am the most protective parent, yet I will confront her with challenges constantly. Currently she knows the concept of tying her shoes: cross the strings, make a bow, cross the strings again, find the whole ... with a good arm and a paralyzed arm...

What a tremendously poignant and thoughtful description of your visit to Shriner's and Dr. Kozin. What you have said made me reflect upon our visits to Dr. Kozin as well. Amazing how similar our experience is to yours. Dr. Kozin is very thoughtful and patient. Children seem to understand that he wants to be helpful and friendly towards them. From the first moment that I heard him speak at a seminar, I was won over by his intelligence, compassion, and drive to do what is best for our children. That is why we switched care to him and are now allowing him to do the one and thus far only surgery on our 2 year old daughter, Amber in December.

Thank you for this wonderful story.

Tanya in NY

I've never met Dr. Kozin but I did send him an email about a month ago with a couple of pics of my daughter...his response "great pics" and then he answered a couple of my questions and said for me to contact him if I ever need his help and then he signed it....Scott, not Dr.Kozin! Although his response was short, it was quite personable and I was quite impressed, even by something as little as an email!
I'm glad your first meeting exceeded your expectations!

We, too, were very impressed by the staff and facilities at Shriner's hospital at first. Our child was even photographed and our permission given for her image to be used in Shriner's promotional material and at a conference on Disabilities in which Dr. Kozin participated. The last words Dr. Kozin spoke to us were "If there is any way I can help you, please contact me."

Imagine, then, our shock and surprise, when, only several months after making that statement and recommending we continue with our current protocol of weekly therapy, Dr. Kozin refused to assist us by writing a letter or speaking to our insurance company when our child's therapy was rescinded. Imagine our confusion when his support staff told our physical therapist that "Most kids have outgrown the need for therapy by that age." (Our child is a teenager, and still has issues with tendonitis, loss of range, scoliosis, pain - to name a few.)

I wanted to add our experience to the postings because I believe it is important for families to have as much information as possible on which to base their decisions. I would never say "Don't go to Shriner's" but I would ask people to keep our experience in mind as they form their opinions.