My son was born on June 1, 1999. I had never heard of Brachial Plexus
Palsy, Erbs or Klumpke's Palsy, or even had any idea that this kind of
birth injury could occur until the day Joshua was born. Joshua's delivery
was a nightmare. He was 9 lbs. 8 oz., 2 pounds larger than my first child.
We (my doctor, husband and I) had no idea that he was going to be so
large. I didn't have any of the warning signs for the possibility of a
large baby or the signs that would indicate the possibility of a Brachial
Plexus Injury. Joshua was born without a heartbeat and not breathing.
Thankfully, the doctors were able to get Joshua's heart beating and his
breathing back within minutes. At this point, we were just glad that
Joshua was alive. Because he was delivered at a Level 1 Trauma Hospital,
he was transported into Portland to a Neo-natal ICU unit to be watched and
taken care of due to the complications of his delivery. Before they took
him, my husband noticed that Joshua was not moving his right arm. It just
layed next to him on the table. He mentioned this to the doctors, they
said, "It's just from the trauma of the birth - don't worry". So, we
didn't worry. We spent the next week visiting our son in the NICU every
day. They told us to pin Joshua's sleeve to his chest so that we wouldn't
be bothered with having to make sure his arm was in the "right" position.
The physical and occupational therapists came by and finally gave "it" a
name - Erbs Palsy. They told us that 90% of the time, babies will get
their movement back. "Just wait and see". So, we waited. We went to an
orthopedic doctor when Joshua was 2 weeks old. He told us that he was
concerned that there had been no movement yet, but to come back in 4 weeks.
So we did, and still no movement. (no shoulder, elbow, wrist or hand!) He
sent us to a neurosurgeon who knew more about this injury. The
neurosurgeon told us that this was a very serious injury and that Joshua
would probably never use his hand again. We were devastated. Never in our
wildest dreams did we think that this was the case. We were not prepared.
I immediately started searching the internet when we returned home from
this appointment. I wanted to find out as much as possible about
Erbs/Klumpke's Palsy. This is when I found the Erbs Palsy Information and
Resource Group website. I started reading about all of these children who
had the same injury. I kept reading about TCH. So, I posted a message
asking "what is TCH and how can I find out about it". Many wonderful
people e-mailed me about Texas Children's Hospital. I searched the TCH
website and finally had good information about my sons injury. It was
scary!! All this time we were waiting for Joshua to get spontaneous
movement back and I was learning that this may never happen. So, I
contacted the surgeon at TCH through e-mail. He returned my inquiry with a
phone call. I explained to him as much as I could about Joshua's injury.
He told me that it did sound very serious because Joshua had not had any
movement at all and he was 6 weeks old already. He wanted to see Joshua
right away. It was important to get started with Joshua right away because
he had no movement at all. Within the next few weeks, I made phone calls
to airlines, hotels, insurance, etc. and many calls to TCH. We just had to
wait for TCH to have an open slot for Joshua to come for a clinic visit and
possible surgery. The call finally came that they had an opening. We had
a week to get ready to go. Everything fell into place so quickly. We left
for Houston, Texas on Wed. Aug. 11th. We took Joshua to TCH for clinic on
the 12th. We met all of the surgeons and they were wonderful. They said
that they expected that Joshua had a severe injury involving all 5 of the
roots of the Brachial Plexus. There plan of action was to do the C-7
contrilateral surgery. Joshua would have been the youngest to have this
surgery. We checked Joshua in for surgery on the 13th of August. Letting
him go to the nurses that morning was one of the hardest things I have ever
had to do in my entire life!! His surgery lasted about 7 1/2 hours. It
was a terribly long day. The bad news was that Joshua had damage to all 5
roots - one of the worst injuries the doctors had seen. The good news was
that they did not have to do the C-7 contrilateral surgery. They did the
primary nerve graft surgery. Joshua did wonderfully through all of this.
He had his cranky times, but now, 3 weeks post-op, he is back to his
charming little self. He is only 3 months old and has been through so much
in his young life. Now that surgery is over, we have one more week with the
immobilizer and then it is "wait and see" for the next 4-6 months. We will
start therapy after the immobilizer is off. We are hoping and praying for
good results. Like I said in the beginning, I had never heard of this
injury until it happened to my son. I am going to do everything I can to
help others learn about this injury and to hopefully help the cause to stop
this from happening to any more of our children. Thank you for giving me
the opportunity to share Joshua's story, even though it seems it is only
beginning!
Sheri: I am 31 years old. I have taught music and special education in
the elementary schools. I love to play piano and spend time with my
family. I am currently a "stay-at-home-mom" taking care of my darling
little ones.
James: He is also 31 year old. He works at Intel Corporation as a Senior
Process Engineer. He loves to work in the garden and take the kids for
walks.
Kaitlynn: She is Joshua's BIG sister. She is 3 1/2, almost 4, years old.
She loves her little brother and sings to him everyday. She loves to dress
up and practice her alphabet. She is a joy and keeps me going each day!!
Joshua: He is 3 months old and has a Brachial Plexus Injury in his right
arm. He had primary nerve graft surgery on Aug. 13th at Texas Children's
Hospital in Houston, Texas.
