I wrote this for the parents of children with disabilitiesand future parents out there.
It describes:By Peggy Ferguson
pferg@charter.net
I wrote this for the parents of children with disabilitiesand future parents out there.
It describes:
When our son,
Joel, was born he was 9 pounds 12 ounces. A large child, a difficult and long labor
and a rough delivery. His left shoulder was caught on my pelvic bone. He had an injury due to
Shoulder Dystocia. This term is not a common term. It sort of went in one ear
and out the other. I thought it had something to do with his shoulder. In fact, it had to due
with his shoulder getting stuck in my pelvic bone (but this is something I would not learn until
after our daughter was born). We were told to safety pin his shirt sleeve down to his chest
and he would be fine in a couple of weeks. Thankfully, he was. I did not know that he had sustained
a transient nuerological injury (another bit of information I would learn after our daughter was born).
I thought that his shoulder was "bruised" or sore because of the hard delivery.
Twenty one months later, our daughter, Emma, was born. Another rough delivery. She, too, was stuck on my pelvic bone. Her right shoulder sustained a very severe injury due to shoulder dystocia known as Brachial Plexus Palsy. The Brachial Plexus is a complex network of nerves running from the spinal column in the neck, throughout the arm and down into the fingers, and out ot various other parts of the body. All this information about Shoulder Dystocia and the Brachial Plexus is not something that I just grasped immediately. I had to research and learn it over a long period of time. Emma is 4 and a half yars old now and I am still learning. Her entire right arm was paralyzed. This is also known as Erbs Palsy. Before I ever got to hold Emma, she began to turn purple. They had to rush her to the nursery and put her on oxygen, an I.V., heart and oxygen monitors. When they finally got an opportunity to weigh her she weighed in at 10 pounds, 7 ounces. Along with the paralysis from the shoulder dystocia (me pushing, the doctor pulling and the nurses pushing from on top of my stomach) Emma's lungs were compressed and did not clear because she was such a large child and should have never been delivered vaginally. She was also buised and swollen from head to toe. I couldn't believe that this was my child!
Emma has been going to physical therapy
once a week since she was about a month old. She is now nearly 5 years old and sees a therapist 3 times a week. On April 8, 1997
she had primary nerve surgery (exploration and grafting)at Texas Children's Hospital, where they actually have a
Texas Children's Hospital, Brachial Plexus Clinic
that has been in operation for about 13 years. During the surgery they discovered that one
of the nerves had been completely pulled out of the spinal column at its rootlet in the neck (C7).
In fact, all of her nerve rootlets were affected in the brachial plexus. The nerves affected
the most were in the middle of the plexus rather than the more common occurances at either end.
This is a more rare instance of Brachial Plexus Palsy.
The most common injuries occur at the top of the plexus (Erb's); The lower root injuries are known as
Klumpke's Palsy. There was nothing they could do to repair this avulsed (pulled out of the rootlet) nerve.
Two other main nerves (C5 and C6)had severe scar tissue around the rootlets. The surgeons were able to scrape
away some of the scar tissue and use an unaffected nerve to make nerve grafts around the scar
tissue that remained.
Another procedure was done in two other areas of Emma's arm known as "nerve releases". Due to the injuries of the nerves at the spinal column rootlets, her nerves were not generating electrical impulses further down in her arm. The muscles and nerves below were dying. (Of course, we did not know the extent of her injuries until the surgery was performed). Emma has very limited use of her right arm. She has no function of triceps, or extension in her fingers, wrist, or elbow. She has very minimal use of her thumb. We had to wait 18 - 24 months to see the full result of the primary surgery. Nerves grow one milimeter, at best, a day. She will not have a full recovery of use of her right arm. Fine motor skills with the right hand will more than likely never be accomplished. Emma wears two braces on the right arm, one to keep her wrist from dropping and her thumb extended, the other to extend her elbow. Emma did gain stronger bicep function and better finger flextion and thumb flextion from the primary surgery. TIME REALLY IS OF THE ESSENCE, so that nerves and muscles don't die off (as was the case with Emma's lower arm, having waited until she was just over a year old for surgical intervention. It wasn't by choice that we waited; we just did not have the information about Texas Children's Hospital until Emma was 11 months old.
Texas Children's Hospital, Brachial Plexus Program has the most caring and informative staff you will find (in my opinion). They are truely wonderful and caring people, willing to take whatever time is necessary to fully inform you of the nature of your child's injury and what, if anything, can be done. No where else, in the many visits to specialist we encountered, had we received as much information about Emma's injury and techniques to improve function in her arm. The staff at TCH are what every medical professional should be: Caring, informative, and they listen, too!
My reason for writing this is for the parents of children with disabilities and future parents out there. I found Texas Children's Hospital, not through doctor recommendations, but through the Internet and a friend who knows how to use the Internet. Don't stop asking questions or doing as much research as you can. There is a wealth of information out there-- be it at the library, the Internet, or however you can get it. Also, a little note to educate: Brachial Plexus Palsy is not a commonly known injury, but it is being seen more and more often. The last statistic I saw was 3 in 1000 births, Brachial Plexus Palsy Foundation. That isn't that low! The unfortunate thing about this injury is, I believe, that a lot of times it can be avoided by having a C-Section. There are Red Flags to watch for, and a wonderful site of information put together by James L. O'leary, son of James A. O'leary, author of "Shoulder Dystocia and Birth Injury, Treatment and Prevention" . : previous births of large children; a previous birth with a Shoulder Dystocia injury, high weight gain, gestational diabetes, ... Doctors will tell you that a brachial plexus injury could occur in vitro or during a C-Section, but I believe those would be extreme cases, such as the mother sustaining an injury during her pregnancy or an emergency C-Section where things were critical and hurried.
Also, I had never heard the term "Brachial Plexus Palsy" or the associated "Erbs" and Klumpke's" terms before our daughter was born. The term "Shoulder Dystocia" was heard briefly after out son was born, but we had no idea what that really meant or the consequences that could come of it. A study was done (Obstetrics and Gynecology, May 1997) that looked at 77,616 consecutive births: 80 with Brachial Plexus injuries and 919 with shoulder dystocia. The study showed that as the birth weight of the infant went up, so would the incidence of brachial plexus injuries. They concluded that they could not recommend doing a C-Section on these patients because it would "result in a very large number of C-Sections to be done just to prevent the brachial plexus in this small number of infants".
As a mother of a child that has a brachial plexus injury, I find that conclusion very offensive. This is a serious injury. It affects the entire life of the child, not to mention the number of specialist and therapist a child must endure. There are varying degrees of use of the arm in these children. Some children have neurological difficulties, breathing problems, vision problems...due to the severity of the brachial plexus injury. If there is a concern about the mother and infants weight gain during pregnancy, doctor's should inform their patients of the seriousness and consequences of both Brachial Plexus Palsy and C-Sections and let the parents make the decision if the doctor isn't willing to. At the very least, parents should be informed of the chance of the injury and what that may entail for them and their child.
Don't be afraid to ask questions of your health care provided and to feel satisfied with the answers. That is, after all, what they are there for. You can spend more than the allotted 5-10 minutes they want to spend with you. They have so many "patients" coming in, they have forgotten what makes a good doctor. One that is attentive. One that cares. You shouldn't have to remind them of your background at each visit. That is what they keep charts for. They should at least take the time to review them.
I gained about 47-48 pounds with each of my pregnancies. The doctor insisted, at one point, that I was eating too much. I had a healthy appetite, but I really wasn't eating too much. After a hard birthing process with our son, I talked with my doctor on several occasions about the fear of another large child and another hard birthing process. I was told that second children are always easier and not necessarily bigger. I honestly don't think that he spent the time listening to my concerns and fears. He is a busy doctor, but I put myself and my child's care into his hands. With our son, he wanted me to be induced 5 days early because he was concerned about my size. With our daughter, I had to ask to be induced 4 days after the due date-- and I was even bigger then! Had I known about Brachial Plexus injuries, I'm sure I would have insisted on having a C-Section. I know of people who schedule them just for convenience. Why can't they be done as a precaution?
For those of you involved with Electrical Stimulation or thinking about it, I would love to hear from you! It took many months of dealing with the insurance company, but the electrical stimulation unit finally arrived in July of 1998. We put the electrodes on Emma at night after she falls asleep and remove them before she wakes up. She doesn't like the sight of the electrodes (Sensory Integration Disorder). We did put them on her when they first arrived (without any current) just so she would get use to the feel of the sticky electrodes--She hated it! She had started to awaken while it is on and pull the electrodes off. Emma's sensation in her arm appears to have improved. However, she still will not tolerate the electrodes to this day and I would really like her to start using it.
Emma's secondary surgery was scheduled for August 17th, 1998 (to follow the first annual Brachial Plexus Summer Camp at Camp Summit in Argyle, TX, so that we could do the camp and the surgery in one trip. It didn't work out that way. We had decided to wait. That there was no rush for the Quad (muscle transfer and muscle releases). However, after Emma's surgeon, Dr. Nath, saw her in person and evaluated her at the camp, we had a new surgery date of Nov 30, 1998. He saw the ackward position that she used her right arm and hand and wanted to do what he could as soon as possible before contractures set in and before that type of function became "hard wired" to her brain.
Along with the quad, she was to have a posterior shoulder capsulate tightening. Emma was suppose to receive a tendon shortening in her wrist at that time. However, we are waiting to see if the quad will correct any of the wrist dropping.
Emma did have the secondary surgery (THE QUAD) done at TCH on Nov. 30th. I am happy to report that Emma definitely has made improvements and continues to improve; that is not to say that is was instant or even gradient, but none the less thrilling for us! Emma can now clap her hands in front of her. Before she brought her left to her right hand, while the right hand was bent in at the elbow with her wrist turned away. She opens up both arms for hugs--Extension that we were hoping for!?! Or is she letting gravity open it? Either way--now she gets it open :o) Her right arm is still somewhat bent at the elbow and she doesn't full extend open her arm, but it is definitely an improvement over what she could/could not do before the quad surgery. She is also able to raise her right hand up to her eyes.
Before the quad she couldn't even get her hand to her mouth. She is also able to get both hands to the top of her head and behind her head. She was using momentum to do these last two things, but appears to be much more natural than before (at least getting her right hand up to the top of her head). And for the first time, just two days ago (April 16th) Emma held her arms out and extended higher than I've ever seen her do and kept it in that postion for more than an instant (she usually doesn't hold her arm extended out for very long). It's still below shoulder level, but we'll take it! Also, Emma's therapist believes that supination is definitely on the way. She is actively holding her palm in a "functinal positon" in activities, able to grasp and hold things in her right hand with more ease than ever before.
The surgery itself was short compared to her primary surgery. This one only took about two hours. Other than being cranky when she woke up in the recovery room and very thirsty, she did very well and wasn't in any pain. She didn't need any pain medication following the surgery. The splinting process took about an hour and 15 minutes. That is because the OT has to measure, make a pattern, and mold the splint to fit the arm perfectly. They have things to entertain the children while this goes on. Also, if your child has a favorite doll or stuffed animal, the OT will give the doll or stuffed animal the splint too! They are all truely wonderful at TCH! We brought along a size bigger shirts to fit over the splint and pants that we were able to put on and take off easily.
For information on the primary surgery--Nerve Exploration/Nerve Grafting, please see the link listed below by Francine Litz.
I have started a support group, "Helping Hands", in the Greater Northwest with my friend, Julia Aten. The first two years it was just the two of us. Now, sadly enough, there are 42 families (that we know of) in our state that are affected by Brachial Plexus Palsy. There are a dozen in Oregon and much more in the surrounding areas. I am happy to share any and all information with any family within or outside of our area.
Philosophy of Brachial Plexus Program
How to Evaluate a Brachial Plexus Program
Facilities for Out-of-Town Patients
Anatomy and Mechanisms of Brachial Plexus Injuries
The Incidence and Prognosis of Brachial Plexus Injury
Long-term Outcome After Obstetric Brachial Plexus Injury
The Historical Basis of Surgery for Erb’s Palsy
Primary Surgery in Children with Brachial Plexus Injury
Secondary Surgery (Mod Quad Operation)
The Future of Brachial Plexus Surgery
Publications: Texas Children’s Hospital Brachial Plexus Program
The UBPN maintains this site which provides
an excellent overview of Brachial Plexus Injuries, a forum to share your story, message
boards that are widely used and more!Also, they have many Informational Links arranged by categories for reference
Please feel free to stop by the site again. We are trying to update frequently and add more links of reference