Welcome New Parents
We welcome you with all of our
hearts and we are sorry you had the need to find us. We created this
site because there was a need for real and honest information. So often,
parents are sent away from the hospital after being told that "it's
nothing", "don't worry about it", "it'll be fine in two weeks". We are a
group of parents who have middle aged and older children and we are
here to help you navigate through these early and very difficult times.
One thing we'll say upfront to you
is that emotions are running high on many levels - of course, if you are
the mom, there are the normal hormonal shifts. Anger, grief and sadness
are absolutely NORMAL feelings. If you feel overwhelmed by your
emotions please seek out some professional care. You need to be present
for your baby so that you can make conscious and educated decisions.
Don't let this overtake you. The most important thing your baby needs at
this moment is LOTS of love because love can overcome all.
Here are some things that may be helpful for you to know at this point...
Visit A 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.
Please do these exercises very
gently and with the utmost care. Doing these exercises will NOT heal the
nerves that were damaged and it wil not stop contractures from forming.
All it does is keep the joints supple while waiting for recovery to
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.
(Please note that services are changing with our changing economy so this next paragraph may already not be true)
In Pennsylvania, you may be 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
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 the absolute key to making informed choices for your child.
- You are your child's best
advocate. Seek out the (few) BEST practitioners. It is extremely
important to get multiple opinions because the treatment protocols are
not set in stone and each doctor has his own opinion of what's best for
the child. Get free airfare if you have to travel for medical care. Ask
the really tough questions and then 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 BUT
remember that each child is different - no two children have the same
injury or recover the same way.
- 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.
- Come to an understanding and
acceptance that if your child has not completely recovered (zero
deficits) by the first 1-2 months of life, that this is a permanent and
lifetime issue and that it affects the whole body and not just the arm.
- Enjoy your baby because this
precious time goes by way too fast. As your child grows up, don't let
them be victimized by this. Even if they have never regain use of one
arm, they can live a very successful and happy life.
A Final MessageTo You
You have been chosen for an
incredible journey. You will feel anger at its deepest depth and you
will grieve hard. You will learn how to navigate a medical system that
may have been foreign until now. You will learn anatomy and physiology
on a level never broached before. You will become a warrior parent as
you advocate for your child day in and day out. You will become a
doctor, a nurse, an occupational therapist, a physical therapist, a
speech therapist and a counselor. You will become expert at scheduling
your day to include appointments, therapy and range of motion. This
journey may take you to new cities. You will meet lots of new people.
You will learn how to become patient because nerves grow back at a very
slow rate. You will feel defeat as your child goes through growth spurts
and things go backward for a while. You will learn that bullies are
found in children AND in adults. You will learn that family and friends
are basically clueless and you will learn how to love them anyway. You
will find your best support in people you have never met. Spiritually,
you will be given a chance to grow in leaps and bounds. And most
important, you will love deeper than you have ever loved before.
You are part of a most incredible journey and we're all on it individually and together as a community.
Welcome to our website and we hope you join us at our Support Message Board.