United Brachial Plexus Network

GUIDELINES AND TIPS

Thank you for considering providing a voice for Awareness Week in your local community. A Letter to the Editor is probably one of the easiest ways to receive Awareness coverage in your community newspaper. Here are a few guidelines to help you submit your letter:

Personalized letters are most welcome, and the Awareness Committee has provided two samples for you. Feel free to use the letters we've provided or use them as a guideline to write a more personal letter. We’d like to stress that personal letters—written in your own words- would be the best option.

Letters to the Editor should be between 150-200 words. Any longer and you risk the newspaper printing only a portion of your letter.

You MUST include your name, address and a contact phone number where you can be reached. Papers WILL NOT print your letter without this information.

SAMPLE LETTER TO THE EDITOR #1

Dear Editor:

The brachial plexus injury community is celebrating the Annual International Brachial Plexus Injury Awareness Week during [date]. Those of us in the local community of individuals and families affected by brachial plexus injuries implore you to join us in the effort to educate the public about infants injured at birth or others affected by traumatic brachial plexus injuries.

Brachial plexus injuries often occur during the birthing process. Availability of brachial plexus statistics vary widely, but where figures are available the general consensus is that brachial plexus injuries occur in 2-5 out of 1000 births. More children suffer from brachial plexus injuries sustained at birth than Down Syndrome or Muscular Dystrophy – yet information on this disability is not so readily obtained.

Other causes of brachial plexus injuries include: automobile, motorcycle or boating accidents; sports injuries ("burners" or "stingers"); animal bites; gunshot or puncture wounds; as a result of specific medical treatments / procedures / and surgeries or due to viral diseases. Adults who incur traumatic brachial plexus injuries often suffer from severe and chronic pain and struggle to find support, information and adequate medical care.

Time is of the essence in treating this injury. A brachial plexus specialist must monitor the injury to optimize recovery and minimize residual effects. Immediate therapeutic intervention is critical while the injury is monitored for long-term effects and the patient or parent must be informed of treatment facilities for further options.

For more information about brachial plexus injuries, call the United Brachial Plexus Network, Inc. toll-free 1-(781) 315-6161 or visit the following web site ubpn.org.

Sincerely,

SAMPLE LETTER TO THE EDITOR #2

Dear Editor:

Are you aware that there is a birth injury that affects more newborns than those born with Down Syndrome and Muscular Dystrophy? Thousands of newborns are affected by brachial plexus injuries, traumatic injuries that may cause paralysis of one or both arms, each year. Availability of brachial plexus statistics vary widely, but where figures are available the general consensus is that brachial plexus injuries occur in 2-5 out of 1000 births.

The brachial plexus injury community is recognizing the Annual International Brachial Plexus Injury Awareness Week during the week of [date]. A brachial plexus injury is the result of an injury to the nerves in the neck that make the shoulder, arm and hand functional. The resulting paralyses differs according to the severity of the injury.

Many times, families with members who have been inflicted with this injury are unaware of the treatments currently available to them, either through misinformation or lack of awareness. Those of us in the local community of individuals and families affected by brachial plexus injuries hope that we can provide a source of information and hope to those who seek treatment.

For more information about brachial plexus injuries, call the United Brachial Plexus Network, Inc. toll-free 1-(781) 315-6161 or visit the following web site: ubpn.org.

Sincerely,

In pregnancy books, the birth canal is shown as very straight forward. During the birth, the baby comes down and out and that's the end of it. But sometimes the baby's shoulder can get stuck on the mother's pelvic bone. It is possible for the tender nerves in the baby’s neck to be injured during birth when this birthing emergency, called shoulder dystocia, occurs. This type of injury, called a brachial plexus injury, can cause one or both arms to be paralyzed. Children with permanent and severe brachial plexus injuries suffer a lifetime of pain, therapy, invasive tests, possible surgeries with long recovery times and emotional distress. Unfortunately, birthing practitioners and pregnancy books rarely discuss the possibility of this birthing emergency with expectant mothers.

There are warning signs that may be linked to an increased risk for this birthing emergency. More importantly, there are steps an expectant mother and a high-risk practitioner can take to possibly reduce the risk of injury.

Risk Factors for Shoulder Dystocia:

• Suspected large baby - over 8 lbs. 14 oz.
• Maternal diabetes / gestational diabetes (fetal macrosomia & assymetry)
• Maternal obesity
• An overdue baby - over 40 weeks
• Short maternal stature
• Contracted or flat (platypelloid) pelvis
• Maternal weight gain -more than 35 lbs.
• Protracted first stage of labor
• Prolonged second stage of labor

Risk Factors for Shoulder Dystocia That May Be Associated with Prior Pregnancies:

• A history of shoulder dystocia during a previous delivery
• A history of giving birth to large babies
• Eight years or more since your last birth

Other Factors That May Be Associated with an Increased Risk for Shoulder Dystocia:

Epidural: Because of loss of sensation from an epidural, the mother may not be able to feel the 'pushing' sensation and the baby might descend in a slightly awkward position.

Tools: The use of tools (for example, forceps or vacuum) to help the baby descend may possibly increase the risk of shoulder dystocia as well.

Labor Induction: There appears to be a possible association between an increased risk for shoulder dystocia and the use of labor-inducing drugs.

Please Note: Even with these risk factors, more women have uneventful birthing experiences than those whose labors are complicated by shoulder dystocia. Moreover, shoulder dystocia can occur in the absence of these factors.

Risk Factors For Brachial Plexus Injury (without the occurrence of shoulder dystocia):

• Uterine tumors
• Tumors in the neck of the baby
• Viral disease
• Other abnormalities
• Breech fetal position at time of birth

What Can You Do To Try and Lessen Your Risk of Encountering Shoulder Dystocia?

• Discuss with your practitioner your concerns about shoulder dystocia risks, and ask what steps you can take now to try and reduce those risks. For example, he/she may suggest that you follow a gestational diabetes diet throughout your pregnancy. See the list of questions below that you may want to use as a guideline to “Opening up the Conversation” with your practitioner.
• Discuss with your practitioner the appropriateness of the environment in which you plan to give birth. For example, if you do have some of the risk factors for shoulder dystocia or if you have a history of difficult births, you may want to consider a hospital birth instead of a home birth so that you can have better access to emergency facilities, equipment and personnel if needed.
• Ask if he/she thinks that consulting with a specialized high-risk practitioner would be more appropriate for your pregnancy and delivery.
• Ask about his/her shoulder dystocia / brachial plexus injury experience.
• Use the Internet as a research tool, and educate yourself as much as possible.

QUESTIONS TO ASK YOUR PRACTITIONER:

“Opening Up The Conversation”

1. I am concerned about my risk(s) for encountering shoulder dystocia. What can you tell me to alleviate my concerns ?

2. After evaluating my past and current medical and childbearing history, do you think I am a candidate for having a large baby?

3. If it was determined or suspected that I am carrying a large baby, would you recommend a C-section? Under what other circumstances would you recommend a C-section?

4. Have you determined if my pelvic outlet can accommodate the safe passage of a baby? Do I have a flat (platypelloid) or small pelvis?

5. How many times have you encountered shoulder dystocia during the delivery process, and do you feel confident about delivering a baby with an occurrence of shoulder dystocia? What are some of the maneuvers you will use if shoulder dystocia becomes an issue during my birth?

6. Does the hospital I will be delivering at have a specific protocol for handling shoulder
   dystocia?

7. What is your opinion of the reliability of using ultrasound to determine fetal weight, and will I be given this test one or more times to estimate fetal weight?

8. If you are unable to attend the delivery of my baby, who will? And are they knowledgeable about shoulder dystocia births? (Be sure to meet with and question all the doctors/midwives in the practice.)

9. Have you ever injured a child during the birth process?

Information sources used in the preparation of this material: Shoulder Dystocia and Birth Injury: Prevention and Treatment by James. A. O’Leary, MD (McGraw-Hill, 1992); the informational website of Dr. O’Leary: www.shoulderdystocia.com; informational materials published by the Brachial Plexus Program at Texas Children’s Hospital, Houston, TX; and the informational website of the Brachial Plexus Program at Texas Children’s Hospital which can be accessed through the main Texas Children’s Hospital website: www.texaschildrenshospital.org.

The intention of this information sheet is to educate expectant parents about one specific birthing emergency. The information contained herein is meant to be informative and does not represent medical advice or recommendations.

Light a candle at dinner each night and take a moment of silence to share Awareness with everyone at your dinner table.

Buy a set of hand-sewn ribbon pins and have each member of your family wear it that week.

Give an Outreach to your pediatrician.

Ring a bell on the first day of Awareness Week to "Ring In Awareness".

Donate a couple of hours of babysitting for a family with a newborn who has a brachial plexus injury.

Follow the proclamation guidelines and contact the mayor of your town to proclaim Awareness Week.

Buy a jewelry ribbon pin and wear it throughout Awareness Week.  Your pin comes with five business cards.  Share all five business cards with people you meet up with that week.

Send the "Official Press Release" to your local newspaper.

Light a candle at your community religious service.  Maybe there can be a prayer for all those affected and for all the doctors and therapists who have helped.

Contact a new family in your area and invite them over for an Awareness Week dinner.

Print up bookmarks and bring them to your local library, school library and community center library.

Bring cookies to your child's class and read the book Different Just Like Me .

Donate your 'therapy' toys to your local children's hospital therapy room in honor of Awareness Week.  Bring some Awareness materials and/or ribbons with you.

Give an Outreach Special Awareness Edition to your physical or occupational therapist.

Write a Letter to  The Editor and send it to the largest newspaper in your city.

Print a set of New Parent Guide brochures and bring them to your pediatrician.

Bring a meal or two over to a local family who will be returning home from brachial plexus injury surgery.

Free blocks of time on the radio are available!  Contact your local radio station - here's how:  Radio Public Service Announcements

Bring a stack of Information for Adults With Brachial Plexus Injuries brochures to a local motorcycle club or shop.

Post information about brachial plexus injuries on expectant mother message boards.

Pin the Quick Facts Sheet on the corkboard of your workplace's lunchroom.

Write an update letter to your family.  Include a Quick Facts Sheet, or a bookmark, or one of our brochures and some pictures.

Motivate your attorney to set up a special fund  to help support individuals who do not have financial access to therapy, rehabilitative equipment (e-stim, splinting) or travel costs to go to a brachial plexus clinic in another area.

• Brachial plexus injuries are injuries affecting the network of nerves that control the muscles of the shoulder, arm, elbow, wrist, hand and fingers. Brachial plexus injuries can result in full to partial paralysis of one or both (bilateral) arms.
• Stretching, tearing or other trauma can cause injury to the nerves of the brachial plexus.
• Brachial plexus injuries often occur during the birthing process. Availability of brachial plexus statistics vary widely, but where figures are available the general consensus is that brachial plexus injuries occur in 2-5 out of 1000 births.
• More children suffer from brachial plexus injuries sustained at birth than Down Syndrome or Muscular Dystrophy—yet information on this disability is not so readily obtained.
• Other causes of brachial plexus injuries include: automobile, motorcycle or boating accidents; sports injuries (known as “burners” or “stingers”); animal bites; gunshot or puncture wounds; as a result of specific medical treatments / procedures / and surgeries; or due to viral diseases.
• Adults who incur traumatic brachial plexus injuries often suffer from severe and chronic pain and struggle to find support, information and adequate medical care.
• Brachial plexus injuries occur 10-20 times more frequently than spinal cord injuries.
• Regardless of causation, it is essential that treatment for a brachial plexus injury be obtained as soon as possible from qualified, experienced medical professionals who specialize in treating brachial plexus injuries.
• While each injury is unique, some individuals may benefit from surgical intervention. Several specialized brachial plexus clinics around the world utilize a variety of cutting-edge operative approaches in attempting to maximize an individual’s function.
• Many families and individuals with brachial plexus injuries face ongoing struggles with insurance companies to obtain coverage for treatment related to their disability. Most insurance companies are unaware or do not understand the treatment protocol for brachial plexus injuries.