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Welcome New Parents

Congratulations on the birth of your little one. We are very sorry that your infant has been injured but we are glad that you were able to find our foundation's website. If your baby is a newborn, here is some information that might be helpful:

Visit Neurologist

Have your baby examined by a neurologist. [A physician who diagnoses and treats disorders of the nervous system.] A neurologist will be able to determine if your child has a brachial plexus injury and/or if there are any other diagnoses.

Occupational or Physical Therapy

Get a referral for OT [occupational therapist] or PT [physical therapist]. The therapist will teach you how to do "passive range of motion exercises" [PROM]. PROM is done throughout the day, usually with every diaper change, to keep the joints supple. We have taken note that in the last few years, the brachial plexus specialists have concluded that it is not good to pin your child's arm sleeve to keep the arm still. Also, range of motion for over the head is now only done to shoulder height to protect further damage to the joint at such a young age.

State Or County Services

Get in touch with the State or County office that deals with "early intervention therapy services". In some states, free therapy is available in your home. In some states this therapy is available at a discounted rate and in other states, it is just available at the regular rate. Go to this site to look for your County or State office contact information http://www.nichcy.org. Also available might be reimbursement of travel costs for therapy, preschool and more. It usually takes somewhere in the range of 1-3 months to set up State or County services.

In Pennsylvania, you are entitled to at-home and in-office therapy services for free and a Medicaid-based health insurance plan that will pay for whatever your primary insurance does not pay for. You will be assigned a caseworker from the County who will visit with you and assist you in setting up your services. The case worker is your child's advocate and will serve as the liason between you and the therapy organization that your child will be assigned to. In some counties there is a small fund set aside to special things. They may pay for a music class or an activity that may help your child. Of course, as government funding to states is reduced, these services will change. (There is currently talk of making Medicaid payable on a sliding scale basis.)

Health Insurance

Call your health insurance company and let them know that your child has an injury that requires much medical intervention and ask for a case manager. The case manager will help you navigate your benefits plan.

Hand and/or Finger Movement?

At age one month, the most important assessment is whether or not your child has hand and finger movement. If your child does not have hand or finger movement, then this is considered a very severe injury. Contact a brachial plexus specialist ASAP. If the hand and fingers move, then you still need to see a brachial plexus specialist but an evaluation can be done at 3-4 months of age. What they will be looking for is the hand-to-mouth movement while sitting up in an infant seat (without assistance from mommy or daddy, the other hand, or gravity).

Notes From Other Parents To You

• Education is key to making informed choices for your child.
• You are your child's best advocate. Seek out the best practitioners. Get multiple opinions. Get free airfare if you have to travel for medical care. Trust your gut feelings.
• You will have a myriad of emotions - try to connect with other families who have children with BPI. The best support comes from those who walk the same road as you.
• Meet other families at family gatherings. As your child grows up, he/she will meet other children and will never feel like they are the only ones with this injury.
• Enjoy your infant because this precious time goes by way too fast.