United Brachial Plexus Network, Inc.

Hi,
We live in London, Ontario and have taken our son to many BPI specialists in Canada, the US and Europe. What Province do you live in? Do you have a paediatrician that can refer you to a specialist?

In Canada most Brachial Plexus specialists are plastic surgeons and occasionaly have an OT or PT working with them. At the clinics we have been to in the U.S., the BPI specialists we have seen work as part of a whole Brachial Plexus Team - a plastic surgeon, a neurologist, OT, PT, sometimes neurosurgeons, peripheral nerve specialists and orthopaedics.

I think almost everyone on this message board has heard that their child's injury would resolve within 3 months. It's great that you have already starting researching information after only a few weeks. The more information, the better.

If you are able, a second opinion from another BPI specialist will make you feel that the most that can be done is being done for your baby and you need to get all of your questions answered and feel comfortable with your daughter's care.

If you want any information, you are welcome to email.
Ingrid

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Thanks Krista, i didnt notice a canadian listing of specialists.
There is indeed a plexus brachial clinic in Montreal, 2 hours away from our city (Quebec).
This is awesome, i'm going to get in touch with them.

Hi,
Where is the BPI clinic? I am in Montreal and have never heard of this. The only place I got help was at the Shriner's here.
Marieke

Marieke

Go to the link above that Krista posted and you will see it.

Thank you, I see now why I or my parents had never heard of this... it's only 5 yrs old... I am too old, darn! Though I may contact then with a few questions...

Marieke

Dear Sir;

My son is almost 6 months old (Born on April Fools Day). He was born at Florida Hospital in Orlando, Florida, USA. Very similiar to your sister, my son's OB screwed up badly, and went into a panic, and yanked my sons neck, and eventually (after the NICU emergency button was hit, and the NICU staff came running in) he reached in and yanked the baby terribly to get him out. He was crushed in the pelvis and suffered severe birth trauma due the this doctors extreme negligence dealing with Shoulder Distocia.

His APGAR score was low after birth, and you could see his arm was not moving. But, within a few hours of the birth, the arm not moving was not our only concern. He had a double pneumothorax (collapsed lungs) and was placed on CPAP. Eventually, he took turn for the worst and went on a ventilator and has chest tube placed.

Thankfully, with the skill of the Neonatal ICU staff, he evenually made a recovery from the lung collapse.

However, he suffered Complete (Total/ Global) Brachial Plexus Palsy on the left side, as well damage to his left diaphram. Additionally, it was clear he was suffering from Horners Syndrome on the left side of face & eye caused by the Brachial Plexus Palsy injury.

Through therapy from 4 weeks into 5 moths, we saw no improvement at all. He had complete paralysis on the left side from diaphram, through the shoulder and the entire arm.

After MRI in month 5 showed at least 2 avulsions as well as the covering from his spinal colum being torn and spinal fluid to leak out (this caused a cyst to form on his spine), it was decided to do immediate surgery. However, the cyst is inoperable and we will need to monitor it as he grows.

I need to point out that we followed up with experts from Boston, MA; St. Louis, MO; to Miami, Florida. We decided to go with the Brachial Plexus Palsy team working out of Miami Childrens Hospital, Miami, Florida.

The surgeon is reknowned; Dr. John A.I. Grossman, M.D., F.A.C.S. in Miami, FLorida. He is a plastic surgeon, as well as a face surgeon, hand and nerve surgeon specialist. He is well known as a vastly knowledgeable expert in Pediatric Neurosurgery dealing with Brachial Plexus Palsy.

Upon doing surgery, he found the damage severe and extreme. All nerves were avulsed except for C7, which was torn. He used the nerves from the back of both legs and created a large and extensive graft transplant. Hopefully, with Gods grace, this transplant will work and we will see some regeneration.

My son is back in PT/OT as well as seeing two Osteopathic Doctors for his crush injuries (Spine, hips, cranial).

I will tell you this: spend time, and research the right and proper doctors for your sisters follow up treatment and care.

Never give up! I will not.

If you want, you can go to Dr. Grossmans Website @
http://www.handandnervespecialist.com/
Phone (305) 666-2004.

The information site for the Miami Childrens Hospital Brachial Plexus Palsy program is:
http://www.mch.com/clinical/neuroscience/brachial.htm

Good luck to you and your sister.

God Bless.

Jim S.

Dear Sir;

My son is almost 6 months old (Born on April Fools Day). He was born at Florida Hospital in Orlando, Florida, USA. Very similiar to your son, my son's OB screwed up badly, and went into a panic, and yanked my sons neck, and eventually (after the NICU emergency button was hit, and the NICU staff came running in) he reached in and yanked the baby terribly to get him out. He was crushed in the pelvis and suffered severe birth trauma due the this doctors extreme negligence dealing with Shoulder Distocia.

His APGAR score was low after birth, and you could see his arm was not moving. But, within a few hours of the birth, the arm not moving was not our only concern. He had a double pneumothorax (collapsed lungs) and was placed on CPAP. Eventually, he took turn for the worst and went on a ventilator and has chest tube placed.

Thankfully, with the skill of the Neonatal ICU staff, he evenually made a recovery from the lung collapse.

However, he suffered Complete (Total/ Global) Brachial Plexus Palsy on the left side, as well damage to his left diaphram. Additionally, it was clear he was suffering from Horners Syndrome on the left side of face & eye caused by the Brachial Plexus Palsy injury.

Through therapy from 4 weeks into 5 moths, we saw no improvement at all. He had complete paralysis on the left side from diaphram, through the shoulder and the entire arm.

After MRI in month 5 showed at least 2 avulsions as well as the covering from his spinal colum being torn and spinal fluid to leak out (this caused a cyst to form on his spine), it was decided to do immediate surgery. However, the cyst is inoperable and we will need to monitor it as he grows.

I need to point out that we followed up with experts from Boston, MA; St. Louis, MO; to Miami, Florida. We decided to go with the Brachial Plexus Palsy team working out of Miami Childrens Hospital, Miami, Florida.

The surgeon is reknowned; Dr. John A.I. Grossman, M.D., F.A.C.S. in Miami, Florida. He is a plastic surgeon, as well as a face surgeon, hand and nerve surgeon specialist. He is well known as a vastly knowledgeable expert in Pediatric Neurosurgery dealing with Brachial Plexus Palsy.

Upon doing surgery, he found the damage severe and extreme. All nerves were avulsed except for C7, which was torn. He used the nerves from the back of both legs and created a large and extensive graft transplant. Hopefully, with Gods grace, this transplant will work and we will see some regeneration.

My son is back in PT/OT as well as seeing two Osteopathic Doctors for his crush injuries (Spine, hips, cranial).

I will tell you this: spend time, and research the right and proper doctors for your babys follow up treatment and care.

Never give up! I will not.

If you want, you can go to Dr. Grossmans Website @
http://www.handandnervespecialist.com/
Phone (305) 666-2004.

The information site for the Miami Childrens Hospital Brachial Plexus Palsy program is:
http://www.mch.com/clinical/neuroscience/brachial.htm

Good luck to you and God Bless.

Jim S.

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Hi,
This makes me sooo mad. How in the name of heaven does a doctor/person think they can grab hold of someone's head/neck, especially a baby, and pull as hard as they can and think NOTHING will happen to them?!!! I mean how Dense can they be? My son(6 months old) has 8 AVULSIONS...8!!! He is paralyzed in his left arm for life!! All thanks to my OB.
I too, was told by hospital staff, not to do anything and not to worry, all his function will come back...ya right! Thank goodness common sense sunk in and I immediately started searching the net for a doctor and called home for help to search for one.
Find a good neurosurgeon who does BPI . Also look into Occupational Therapy for her. They will do ROM and help build her bicep.
Good Luck...sorry for my rant..lol
Jo