United Brachial Plexus Network, Inc.

I am contemplating meeting with the hospitals in our area to try to get some change happening for how BPI is treated immediately after birth. With that I mean, no one was around to really give me information on what was happening or what we should do once we were home. Immediately after our birth DD was taken to NICU for x-rays. THey suspected a clavicle break and found none. We had numerous Drs come and check on her but it wasnt until the hospital PT and then our pediatrician arrived that we were given a diagnoisis. Thank God for our ped as he immediately scheduled visits with an outside neurologist and PT but I am saddened by how we werent given medical information on what was going on and no one gave us basic instruction on how to dress, nurse, hold an infant with BPI.

Im just curious what others experienced while IN the hospital and what things you thought could've been different. I want to gather my thoughts and come up with some actual recommendatios before I move forward. I dont really want discussion on what should or shouldn't happen to OB's, etc. but what would've helped you cope and understand what was happening to your little one.

GREAT question. great thread.
same thing happened to me. clavicle x-ray. no break. and then no info. Drs. told us she had a problem with her arm and it will get better over time. didn't tell us the name of the injury, the prognosis, the care for it, the next step, a referal. nothing, nothing, nothing. at the 6 week check up, we were the ones who pursued a referral to a neurologist. (didn't even get a BPI specialist until we pursued that!)
Sara, What your doing with this is needed and very important. I'm sure you'll get a lot of interesting stories ! B.V.

It definitely would have been nice to have been informed on what EXACTLY a "brachial plexus injury" is.

One thing that sticks out in my mind was watching the nurse flip my daughter in the NICU and letting her injured arm flop all over the place. I was horrified at that and (along with how bruised and swollen my baby was--and having to be hooked up to all those monitors for her heart, etc). She told me it "didn't hurt her any" but knowing now what I do, I'm sure it didn't help anything with my daughter's nerves.
Not only do parents need to be informed; medical staff still need to be informed!

Peggy

We were not even told our daughter had an injury. She was taken to the NICU right away, I was told this was because they were afraid her blood sugar would drop. Months later we found out her APGAR was 2. They bundled her up tight wrapping the injured arm first. I just thought she couldn't squirm it free. It wasn't till I got her home I noticed her left arm was limp. I thought she had a stroke. She was examined twice by the hospital ped.he used her as a teaching case for nursing students. But nothing in our records.

Cara
That is exactly what happened to us, my mother did not know I was injured until we were home. They took a cardiogram right after I was born so they knew something was wrong.

It would be great if each hospital had brochures with UBPN website address and information available for parents.

When my granddaughter was born premature (26-1/2 weeks) we had all sorts of printed materials given to us explaining everything. My husband and I, along with my son and daughter in law, had the most caring experience. A neonatologist explained every step forward and backwards that the baby would make over the next few months and years. It was scary but so helpful when she had setbacks. We need the same care for obpi babies; we don’t come with directions but do need special handling and also attention to pain symptoms and discomfort. Mothers also need instruction and help with babies like me who could not nurse.

The entire family could also use some mental health support because this is so traumatic and life altering for the entire family.

Sara,

I think you have a GREAT idea and I hope you are able to make some progress with this. It is a shame that hospitals aren't required to provide us with information.

In my child's case, my husband noticed the limp arm soon after and then the person who delivered said check his shoulder. They did x-rays and determined nothing was broken. Then after asking questions we were told by a nurse who was VERY casual that he had shoulder dystocia and a brachial plexus injury. I remember being confused about this foreign language. I had her repeat it a few times and knew I would never remember it, so we asked her to write it down. We were told by her and later by a pediatrician that our child would be "all better in 24 hours". We left the hospital with his arm pinned to his shirt with no instructions or anything. I only wish they were right about the 24 hours. This is pathetic, but I am thankful we were at least given the proper name and they actually charted it in the chart, although the rest of the chart was full of lies. Having a diagnosis meant everything to us since we were able to immediately research on our own. We have to give much credit to Peggy Ferguson since her website was the first that we found. Gosh, I remember those days and the heartbreak of reading the seriousness of this injury....sure a different story then what everyone else told us.

Sara, please keep us posted on your plans and progress. Thank you so very much!!!

My son was initially taken from the delivery room into a side room to try and resuscitate him.
He was brought back into the room about 5-8 minutes later ( my husband was with him all that time)
We were told immediately that he had Erb's palsy and it would take few weeks to get better (incorrect info - but at least they were trying to be honest!)
After I underwent emergency corrective and reconstructive surgery that same evening,
we both went up to the post natal ward and about 6 hours after his birth he was sent for an x ray to rule
out a fractured clavicle then admitted to NICU due to breathing difficulties and trauma.
He was discharged 2 weeks later and two days after that a physiotherapist came to our home and showed us how to perform his ROM -- she then came round every week until he was 12 months and after that every two weeks. He was referred to a specialist in bpi at 3 months old and had a nerve graft at 6 months old.
I think I had quite good support given the contraints on the NHS service here in the UK and felt well supported by Gavin's Physiotherapist.
Now when our Erb's Palsy group gives our annual conference for Midwives, we always have a Consultant Clinical Psychologist speak on the best methods of breaking the news to the new parents and on the grieving process many families go through.
She is always VERY well received and I think that the midwives value this insight into how to help parents through this very bad time for them.
I just thought I would share my experiences of "over here"
Karen

Mine is the same story...As my son was delivered, the doc said "I think I broke his clavicle". He didn't have any breathing difficulties after the first minute or two, but he went off to get x-rays of his clavicle and I went to surgery for repair. I didn't return until 5 hours later. My husband told me he wasn't moving his arm, but the x-ray was negative. The nurses pinned his sleeve to his shirt and that's all we heard. The next morning our pediatrician came in and mentioned the arm, saying something like "90% of these resolve quickly". However the next day, when he was showing no signs of movement - she said she "wasn't very happy". And we had our first inkling that something more permanent had happened. Our pediatrician actually gave it the diagnosis on his first checkup and started the referral process to OT while we were in the hospital, which we were in at 4 days old. But as far as the OB and hospital staff - NOTHING. And of course we know why, although it doesn't make any sense. 'Fess up! A child is injured! I would have been much happier had my OB come to me and told me that whole story. Oh well...
Sara - I'm glad you're "on" this. Thanks

I guess I was lucky. My husband and I were following a book called "What to Exspect when your Exspecting" or something like that. In the book it had mentioned getting your own pediatrician to come in and examine your baby after birth and NOT use the hospitals. Needless to say, the hospital records said nothing about Michael's injury, the Dr.'s report mentioned nothing about his injury. Only the pediatrician said it's Erb's Palsy the same day he was born and told me who to see.

Unfortunatley I don't believe we will ever see information in the hospitals about this type of injury. Just by definition alone it will point a finger to the Dr. and/or the hospital. Instead they choose to quietly walk away from this issue and take their chances.I don't know what the answers should be other than awareness through education and the insurance companies cracking down on the Dr.'s and forcing them to really look at this growing problem. There are just too many children being hurt. There is an old saying that money is the root of all evil, but when money talks bull **** walks.

Patty

Great topic, Sara!

During delivery, my son was stuck behind my pubic bone. Once the doctor pulled so hard on my son's head that I was pulled toward the doctor, another doctor was called in to assist. Suction was used seven times. When my son was finally delivered, his right arm was noticably flail and dangled as he was carried to the bassinet to be cleaned up. His APGAR's were 7 and 9 at 1 and 3 minutes, respectively, showing absolutely no signs of fetal distress. We were told that his shoulder may be dislocated. An x-ray machine was brought in. After three x-rays, there were no signs of dislocation or fracture. After taking over an hour to stitch up my fourth degree tears and after four x-rays of me, the ob tells me he's missing a sponge. After going to the OR to be opened up and "cleaned out," I was told that my son had shoulder distocia and it may take up to three months for my son to regain full motion of his arm. The in-house pediatrician told us the same thing. However, after going to our pediatrician when my son was 5 days old, we referred to a pediatric orthopedic who diagnosed ROBPI at 6 days of age. After seeing the orthopedic for three months, we were finally referred to a pediatric neuro-surgeon who beleives that my son's C5 is severed. Next is primary surgery.

Honesty and literature immediately after my son's birth would have been so helpful instead of trying to cover up the doctor's mistake.

Good luck on your mission, Sara!!