A Moment of Thought- In Memory of the Doctors at TCH
I want to take a moment to pause about the death of three great physicians.... Dr. John Laurent, Dr. Rita Lee and Dr. Saleh Shenaq. When we brought Maia to Texas in 1998 for her first evaluation and surgery, these doctors gave us explanation, comfort and hope for the future. They presented themselves as a team who worked solely for the benefit of our children. As much as there is controversy and public debate about their techniques, methods and administration, I, for one, am very grateful for all that we received as a family which helped so much.
It was Dr. Shenaq who started the concept of coming to family outings. He was the first physician to come to the Brachial Plexus Palsy Foundation's picnics which back then was just a couple dozen people hanging out at a park. It didn't matter to him - he brought most of the team including the two Lisa's and Nancy Conte and others and we balanced out the evaluation with some family fun.
I don't know if TCH was the very first bpi clinic or not - but it seems to me that it was. I remember the day after Maia was born... my husband went home and searched the internet and came back with 4" of papers for me to read. He said, "Frannie - don't worry. If Maia's arm doesn't heal on its own, they do nerve grafting in Texas." Nerve grafting sounded so alien to me - like - wow that'll never happen- Maia will heal. But at least I knew that there was help somewhere.
All three physicians were gravely ill during their last days on earth but I hope and pray that they are now pain-free and in God's home teaching some new souls their craft to replenish the great loss we have here on earth.
-Francine Litz - who will never forget what it was like to bring her little baby to Texas Children's Hospital on that very cold day in December of 1998
[ADULTS ONLY PLEASE] Hi - Maia's mom here... Francine.... this site represents the new, more independent Maia who has blossomed right out of this BPI rut we've been in. After four surgeries, countless hours of therapy, splinting, bracing and e-stim.... Maia went to Kindergarten one morning and played like any other day in the kindergarten playground with her girlfriend by her side and a personal aide just 3 feet away. In one moment, her foot got stuck under a hidden chain, she went down, broke her arm and restretched her nerves and lost everything she had worked for in six years. In the midst of my own personal devastation a voice from heaven came down and said "Franciine, Maia is supposed to have a brachial plexus injury - any questions?" And it was this voice that gave me the most pause I've ever had in my entire life.
There was tremendous pain, both physical and emotional. She didn't even want to acknowledge that she had an arm anymore. She was scared to walk, go places and have any fun... fun was written out of her book. A couple of months later and Maia was cleared for activities, I decided that I had to save my daughter from being stuck in this fall ..... so I signed her up with a private gymnastics teacher. Lynne took Maia on the trampoline and did 3 months of teeny, tiny, itsy, bitsy jumps - just to get Maia to consider getting her body off the ground. There were six different trampoline-type of equipment there so she just worked her way around the gym, holding hands with her instructor and taking little tiny jumps. The next step in her recovery was to get started in Aikido. This was suggested by her at-home PT, Mindy - thank you Mindy!. Aikdo is different than Karate in that basically you are trying to get out of the way. You fall and roll to get out of the way OR you disable your attacker by making him fall. So it's all about falling. It was clear that Maia needed to learn how to fall "better". I painted gold hearts all over her affected arm sleeve and all the children were taught about Maia's "be careful with this arm". Just two days ago, afer 1 1/2 years of Aikido she was tested and awarded her yellow belt! Yay Maia!! The next step was to get Maia mobile and T-ball certainly fit that need. She played as a one-handed player and did just great! Then Maia returned to her dance classes where she is forced to wear those slippery tap shoes on polished wood floors. She really has to relax and allow her body to move and let the fear go to do tap dancing. She's been in two shows since and has done very well. She just loves her dancing! And then she joined the Jr. choir at our synagogue and that takes up any remaining free time we've had in this family!! hehe With each activity we added, Maia gained more and more confidence and today - now 2 1/2 years later we are different people. Thank God! Being at the stage we are in right now - here are some current thoughts I wanted to share with you: (1) THERE IS NO DOUBT IN MY MIND THAT BPI AFFECTS THE ENTIRE BODY Edited on 9/13/07: BPI Injuries come hand in hand with traumatic births and these traumatic births (lack of oxygen, etc.) can result in way more going on than the bpi. Please have your doctors assess the WHOLE child and not just the arm. These types of exams are done by a team of specialists and is called a "Neuro-Psych" evaluation. When Billi Cusick (www.theratogs.com) assessed Maia a couple of times over the last year, the numbers showed just how distorted her whole body was. Her leg is shorter and that alone shifts her whole pelvis and everything from that point up is at a bend. No wonder children are at risk for scoliosis. Hey, walk around crooked your whole life, what's going to happen to your spine? We have to do what we can to convince the specialists to study the affect of bpi on the ENTIRE body. Every part of the body is attached.... "the knee bone's connected to the...." What's the question here? So when I found someone (Billi Cusick) who looked at the whole body - not just the arm, it was like a breath of fresh air! Finally, someone who understood what I was seeing all along! And now Maia is wearing her full body togs, we are working on the leg length differences and she's able to move and be in her body at much more ease than ever before. (http://www.injurednewborn.com/maiatogs.html) (2) THE MIND IS VERY POWERFUL or IT'S ALL IN HOW YOU TEACH YOUR CHILDREN If you believe that you can do something - you will. Don't let your own fear stop your child from doing things. And don't let your child's mind stop them from doing things. Sports CAN be played one-armed. And with practice, they can be played VERY WELL. Music can be played one-armed. Aikido can be done one-armed. Dancing can be done one-armed. It's all in the mind and in the spirit. You can raise your child to feel victimized by this or you can raise your child that everyone in the world has differences and so what - just figure out a way. This fall Maia had really empowered us into the "so what - we're going to do it any way we can" mindset. And boy oh boy - you should see Maia go. Nothing stops her. Get your children involved with music because music affects the neuro pathways that help your child get moving. In regular life, Maia is not very coordinated at all. But when she is playing the drums, all of a sudden she can coordinate two arms and two legs each doing separate and different things at the same time. It is VERY powerful. Have diaphragm weakness? Get involved in choir. For each issue the child has, there is an activity that can help the child transcend. (3) ABOUT THE DIFFERENCES BETWEEN CHILDREN Every single child with bpi is different from the next. There are no two children alike. And I've been saying this for 8 years but this concept runs SO deep. You would think that with partial ruptures and nerve grafting surgery and more Maia would have been ok now right? Well, she has diaphragm weakness which causes to not take in enough oxygen which changes how her arm can or can't move. She has hypotonia (low muscle tone) which is caused by nerve damage, too, which really affects her posture and her life. She has a speech impediment from the hypotonia which causes people not to understand how she talks (even after years of speech therapy). She has sensory integration issues that far outweigh mostly everything else. All of these things add up and have defined what she has been able to gain back in terms of function, etc. And this brings us to... (4) WHAT IS RECOVERY? After 8 1/12 years, I have recently realized that true recovery is really just about ACCEPTANCE. Each child has their own destiny in this. It happened for a reason. There were things that the child and/or people around the child had to experience and learn. The faster you can accept this injury, the faster your child and your whole family will recover. I was so angry at God when Maia fell and lost everything. Oh boy - I thought that was it - God had pushed me to my limit. So many people have asked me - how can you stil be active in the bpi world? How can you still work and support people the way you do with such loss. Over time I realized that this WAS the learning I had to do. I had to accept what it was in order to move forward. Not accepting it was like shackling Maia down to the ground and telling her that she didn't exist. Accepting it and talking to her about acceptance took the shackles off and she started to immediately fly after that. The success she's having now in her life is proof that all we needed to do was accept it and once that happened, we were showered with gifts. And what do I mean by gifts? Well, when I hear my daughter playing piano so sweetly - you better believe that's an incredible gift. When she comes home with a new belt in Karate and a huge grin on her face - that's a gift. When she gets off the stage after a 3 hour dance show and I see how energized she is and excited- that's a gift. We haven't had anything taken away... we've been without any doubt in my mind gifted! And the gratitude that I feel is so tremendous, I can't even describe it. (5) NO MAGIC BUTTON There's no magic button. There's no magic surgery. There's no magic exercise or electrical stimulation that wlil make this permanently better. There's no guarantee that what we do today will be ok 6 months from now, 2 years from now, 10 years from now, 20 years from now, 50 years from now. There's no guarantee that anything we do today will cause less pain tomorrow. As a matter of fact, pain is the most unknown in this whole equation. Every surgery that gives one thing will also take at least one thing - scar tissue alone is an issue to consider. You have to ask what the downside is and you have to weigh the worth of the upside to the downside. Dissect it - ask other people and professionals to help you dissect it before you make any decision. But I still believe that true recovery is ACCEPTANCE. Once we accept that our child has this and that it is lifelong and permanent, then we can move forward and do the things we do NOT to make it perfect - because perfect is unavailable - but things that will give our children the best quality of life possible. Do the surgeries that make the most sense to you. Do the therapy and other non-surgical interventions that can help the body heal itself. Come to an understanding that exercise and other ways to help the body on a daily basis will be paramount over the child's lifetime. Learning how to be independent in life with one arm is also important because there is no guarantee over a lifetime that the affected arm is going to work from one day to the next. Teach your children about overuse and how to take care of their unaffected arm. There should be just as much time spent on the unaffected arm as there is on the affected arm and stretching and relaxing the unaffected arm is paramount for better days later in life. AND that all these things are fine - but you still need to... (6) CREATE A LIFE OUTSIDE OF BPI Your child needs to be able to follow his or her own passion for what they are going to do in their lives and BPI can't hog up all their time! Not only that but children get burned out! Give them a break - breaks are good. They need to breathe - they need to be normal. They need to sleep without all the equipment sometimes. They need to do their "work" but they also need to be regular children, too. Don't forget that! (5) PARENTS HAVE THE POWER TO MAKE GREAT CHANGE IN THIS BPI WORLD Do your own research - never stop learning about this and asking questions. And when you think you've asked your last question, look at it again and come up with ten more. Seek out multiple opinions because each time you do that you gain the ability to ask more questions! Your constant delving and questioning creates forward learning and forward movement. The children need you to keep on. Your energy powers the direction the specialists go in. Your own research will give them information that they will be able to use for the benefit of all the children. Things are moving forward thanks to all the work that we parents are doing - don't stop! Edited 9/13/07: Here's an example of how parents can change the bpi world!! Click here and read!
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