United Brachial Plexus Network

I believe a previous post was entitled "when all is quiet". Those four words speak measures. It is when all is quiet that it all comes back. My son is 6 months old and still, when all is quiet, it all comes back to me. I have kept a detailed journal off and on throughout this experience in order to keep my sanity. I've posted the first part to share with those of you that are beginning this process...this seeminly never ending process. Sometimes it helps to know that there are others out there...and sadly enough, there are.




“We’ve got some shoulder injury.” “It will get better, right?” “Most certainly.” That was the end of the conversation that began my families struggle to help our child.

I should probably explain a little about my pregnancy and labor experience. My pregnancy was normal. I was huge but the pregnancy was fine. At 41 weeks I thought I was having contractions. Probably not but I thought so. My husband, parents, and I went to a store and walked around for about an hour. Then upon their insistence I went to labor and delivery. I was have contractions but was not dilated. I insisted upon staying. They would induce me the next morning. I had cervix softening medication that night. My pitocin drip started around 5:30 on Monday morning. By around 1:00 I was fully dilated. I pushed for 3 hours and 57 minutes. The doctors notes will say 3 hours, but they are wrong…it was 3 hours and 57 minutes. The nursery heated the warmer four times. We begged the nurse to call the doctor. Finally I refused to push anymore…my records even say “patient refuses to push”. The doctor was called. He came in and used the vacuum, but was not successful. He kept commenting on how large my baby must be. That his shoulders might be bigger than his head. Finally the doctor got out the forceps. He was able to get Grant out with them but it was tough. A lot of pulling involved. I had a 2nd degree episiotomy (which I later learned was a 3rd or 4th degree). Grant looked like a seal when he was born. Gray skin and gray eyes. He wasn’t crying like the babies do in the movies. I was asking “what’s wrong with him, what’s wrong”. The nurse told me just to let the doctor do his job. I tried to remain calm and remember that everything is not like the movies. We were told that Grant was fine even though I later learned he was not. We were lied to constantly.

They took Grant to the nursery and put him on oxygen. He was fine…just needed “a little help”. My Husband went home to sleep around 10:00, I think. At 10:30 we had to call him to return to the hospital and follow our child, in an ambulance, to the nearest NICU. Grant was not fine. The NICU doctor explained that there might be a lung issue, heart problem, and bleeding on his brain. I asked if it was life and death…the doctor said “your baby is very sick”. I asked to see him before they took him because I thought it would be my only chance to every see him alive. They wheeled him by my bed in a small, plastic box. He was still gray and hooked up to more things than you can imagine. I saw him for about three minutes and they took him to the ambulance to be transported. Scott followed. Scott called the hospital at 2:00 in the morning to tell us that he was going home…the doctors had come out to tell him that Grant would be ok. He had pneumonia and some bleeding around the brain but he would be okay.

I spent the 48 hours I was given in the hospital on a roller coaster of emotions but the roller coaster never went up. I cried. We had a few visitors come to the hospital but I asked that they not come in the room. We even put a “no visitors” sign on the door. I cried. People could come but I didn’t have a baby to show. I didn’t even have a sign on the door showing a baby had been born. When you have a baby and leave the hospital they send you home with diaper bags and formula. Lots a little gifts from various companies that want you to buy their crap. I could have cared less about this stuff. However, I guess since I didn’t have a baby to take home they decided I didn’t need any of that stuff either. They didn’t give me any of the things they give other moms. The things I could have cared less about getting meant a lot at that point.

I was released and the first place I went was the NICU to see my baby. I had seen him the day before but only because Scott videoed him and brought it to me. I could barely walk. I laid in the back seat of the car while Scott drove. Then I rode sideways in a wheelchair on pillows to see Grant. I was in horrible shape and in really bad pain.

I rested during the ten days Grant was in the hospital and went to see him every afternoon. Each afternoon was the same. I laid in the back seat and rode in a wheelchair. We had been told that we might have to room in with Grant before we brought him home. Whatever we had to do was fine. However, the hospital didn’t ever confirm this. Therefore, we went to the hospital on the evening of the 27th not prepared to spend the night. We were told that if we wanted to take our child home the next day we had to stay the night so we stayed. I should probably explain what room in is. You stay in a room, at the hospital, with your child and learn to care for that child. Note the last part of that sentence.

We were lead to a room down the hall. It was maybe 6 feet by 10 feet. There was a four post bed with three posts, a sink, and a broken recliner. The bathroom was down the hall. They rolled our child in and said here he is! That was it. The “teaching” aspect of rooming in was out the window. Well, so to speak because if you remember, there was no window. Grant slept a total of 15 minutes the entire night and we saw nurses only twice. Once they came and took him to take his vital signs and once they took him to give him a bath. We were allowed one meal while we were there. We chose breakfast…it never arrived. The only thing we were given was a glass of water. My husband went home to get some rest around 6:00 the next morning and my mother came to stay with me. See I was the babies mother so I couldn’t leave. I had to be “taught” how to care for my baby and couldn’t leave the hospital until 5:00 that evening. By the time we left with Grant, I had been up 26 hours.

I had always dreamed of taking my baby home with my Husband. That didn’t happen. By the time we got to take Grant home we didn’t care. My mother drove Grant and I home. We did put him in the outfit I’d planned to bring him home in but it really didn’t matter. No one cared. We just wanted to get him home.

Spinal taps, MRI’s, cat scans, x-rays, and plenty of antibiotics later we brought Grant home.

My son was born on June 18, 2007 and suffered a brachial plexus injury at birth. He spent ten days in the NICU for unrelated problems. After coming home, we noticed his right arm was not getting any better. He had slight movement of his fingers but that was it. We were referred to therapy. His occupational therapist was great. However, even with the therapy we saw little improvement.

When my son was about two months old, my husband and I questioned his pediatrican about his arm. She told us that she’s never seen one that didn’t heal. She went on to tell us that one time she had a patient that could lift her arm over her head and her arm was weak, but it was “healed”. That was not acceptable to us. I had a gut feeling that his arm would not be getting better on it’s own.

We continued to try to find help for our child by contacting our states Children’s hospital. We went to our appointment and were told to “sit and wait” that most of these injuries spontaneously heal. Needless to say, we did not return to our next appointment.

The therapist even ordered a bulky brace to try and straighten his wrist. The brace was a difficulty thing. Until the brace, it wasn’t obvious that my child have suffered an injury. However, the brace, almost seeming larger that he was, made it obvious to the world. People stared and asked rude questions. I began to come up with even more rude answers. Up until this point I had not been overwhelmingly angry. All my attention was focused on getting my child the help he needed. However, with the brace came the anger. I was angry at the doctor for doing this to my child, angry at the pediatrician for not referring us, angry at God for allowing this to happen to me and my child. It was very difficult.

I fought insurance constantly. In an attempt to have his ambulance transport paid for, I went to the hospital and pulled the appropriate medical records. I made copies of things that looked different from what the doctors had told us. I sent the records to a family friend who told me what they all meant.

I was driving down the rode, on highway 101 in North Alabama, when she called to explain the records. It made me sick. My child had been fully resuscitated. My child had an IV through is umbilical cord. There were so many things that happened that we were not told about. It made me sick.

After hours of internet research and telephone calls, my father found Cincinnati Children’s hospital in Cincinnati Ohio. I called and discussed my sons condition and medical history with them. We set up an appointment for four weeks later. My son would be three months old at that appointment. Three months seemed to be the magical number. Everything would start to heal by three months or it wouldn’t.

My Husband and I drove to Cincinnati with our three month old in tow. We anxietiously awaited our appointment where we felt ceratin they would recommend surgery. Before the appointment we took our son to have an EMG at the same children’s hospital. They gave him a sedative before the test. The test required sticking thin needles, like accupunture needles, into the muscles along his arm to detect activity. The EMG results were not good but were not bad. The doctor that performed the test felt like the nerves had begun to heal somewhat on their own.

After the EMG, we went across the hospital for his clinical appointment. We were seen by three different doctors who all moved his arm in different directions and pinched him to check for sensation. As we expected, they said our “kiddie needed surgery”. Evidently this decision doesn’t come easy for some people because from there the surgeon began to explain to us how urgent it was to have the surgery immediately. However, I interrupted him to say “okay, how soon can we come back for it.” For us, it wasn’t a matter of whether or not to have the surgery…it was a matter of when. However, the surgeron felt optimistic that the nerves were not severed at the spine…an avulsion. Our appt. was 9-25 and surgery was scheduled for 10-30 with the hopes of moving it forward.

The anger subsided, for a time, and excitement set in. I was excited about the fact that my son’s arm would be fixed. He would have surgery and his arm would get better. “Most certainly”. We left that appointment excited, scared, and anxious. How could we possibly wait another month!

After being back at home for a few days, the surgeons secretary called and said , how’s October 3rd. That was only one week away!!! Airline tickets, hotels…the list went on and on, but we would do it…we had to. Family pitched in and helped. We cashed in frequent flier miles and hotel points. We rearranged schedules but we got it done.

Hi there I am new to this website and I just finished reading your post. Just some background info--My daughter was born the day before your son on 6/17/07 she was 9 lbs--I pushed for 2 hours and she had to be pulled out--her right shoulder was stuck so her injury was to her right arm--I delivered at a teaching hospital so the pediatrician ordered a x-ray to make sure her arm or clavicle was not broken and it was not--OT came and saw us in the hospital and gave us exercises to do at home and scheduled an outpatient appt. she has been seeing OT/PT since a week old--at 3 months her shoulder dislocation was not getting better so we saw an orthopedic surgeon that works at the hospital and he ordered an EMG and nerve conduction study--they showed that she had nerve damage but that they were healing--my daughter was able to move her arm with the help of gravity--she was not able to bicep curl or raise her arm above her head--the surgeon then ordered a MRI--it showed that her shoulder was dyslocated, so then she went in for surgery on 11/27--she was in a cast for 3 weeks and he did a ct scan and it showed that her shoulder had popped out--on 12/20 she went back in for surgery and he made an incision on her back and released some soft tissue, now she is in a cast from her right arm down her right leg--tomorrow we have another ct scan to see if her shoulder is still in place--

I am sorry about your delivery and your son--but how is he doing?

I'm so sorry that happened to your daughter. Its so weird that we were only one day apart though.

My son is doing well. No movement as of yet but we are hopeful for March or April. Hows your daughter?

Hello there, The ct scan Monday showed that her arm is still out of the socket, so the Dr. wants to do a muscle transfer in about 6 weeks. When she was born she was not able to move her arm, but through therapy she was moving it by her 3month mark, but she was only able to bring her hand to her mouth with the help from gravity while laying down. and she was not able to raise her arm above her head. she was starting to grab items but was so weak she would drop the items. She was in therapy every week since a week old, the last 1 month and half we were e-stemming which helped. We went to see the doctor because the therapist was worried about her shoulder. Her EMG and Nerve condution study showed that her nerves were firing but they were severly damaged. The Dr. is concerned about her bicep but right now he is more worried about her shoulder. I live in Ocala, fl near Gainesville and I just found out that Dr. Nath will be in Orlando in March, I signed up to see if we can see him when he comes to town.

What happened with your son? What surgeries has he had? Where in North Alabama are you in? My in-laws live in Florence, and I actually went to UNA for college.

We are from Florence/Athens area but live in Montgomery now.

My son had one avulsion, one tear, and severe stretching of another nerve (C5, C6, and C7). He had primary nerve surgery three months ago at 3 months of age in Cincinnati.

My daughter was born on 06-17-06 with a right obpi. What a coincidence, just 1 year difference. She had a skull fracture at birth and was transfered to our Children's Hospital in Seattle, I was lucky I guess because they took me with her in the ambulance, but I remember how miserable it was not having any recovery time for me. It's weird to think now that what had worried us the most at birth healed up on it's own and the arm injury that was supposedly going to correct itself is the big problem.
Good Luck to you and your babies.

Hi Brooke,

I can't begin to tell you how familiar your story rings to my ears....I couldn't help but cry for you and your daughter and mine and every other child and parent that has to go through this....for me it has been 21 months since Cass was born...21 months of doctors appointments,referrals,PT,OT,procedure after procedure and surgery..fighting with Manitoba health and talking to lawyers...not exactly how I had imagined spending the first 21 months of Cassidy's life with her....our kids endure more than anyone should ever, ever half to.
My anger comes and go's, my grief never leaves and neither does my helplessness...I'm doing all I can for my daughter and it won't ever be enough to fix her.....
Some days I feel like I have accepted her injury and then I'll have a day like today where I am back at square one emotionally.
I hate the fact that the doctor who did this continues to practice and live his life happily with absolutely no regard to what he did to Cassidy....while everyday I have to watch her struggle to do the simplest of tasks....
this is a total rant and I am sorry to depress anyone some days it's more than I can bottle up...

Dawn mom to Cassidy 21 months ROBPI

Dear Dawn,

This is the place to Rant. Feel free to Vent anytime. It is a very healthy thing to do. Never need to apologize, our UBPN Family understands as we all are there too at one time or another.

((((HUGS)))),
Carolyn J
Adult LOBPI/69

Wow, I am so sorry for all you have gone through! Our birthing experience was not my ideal situation, but we were also very blessed with ours. Our son (4 and half months LOBPI) was supposed to be a home birth, but he waited too long to come out! Our midwife was with us at the hospital which was very nice. She explained a lot to us afterward when we had no idea what was going on! In our case the cord was wrapped around his neck very tightly and had to be cut early, THEN he got stuck. He was on oxygen for awhile and didn't move his arm for 3 months. His four fingers worked within a couple of days, though. His thumb still isn't doing much. Anyway, our family doctor saw him in the hospital and had already referred him to the brachial plexus clinic at Children's hospital of Wisconsin before he even had his two week appointment. She said she knew what it was but didn't know anything about it. I am so thankful for that! I also cannot fully blame our ob. I feel like he did what he had to do, especially with the cord already being cut. However, Titus is able to move his arm and I don't know how I'd feel if I wasn't seeing any improvement! Our situation was so different, which like I said, I'm so thankful for and I will be praying for all of you. Oh, and our doctor really wanted to do a C-section and we asked him if we could please try naturally (with the help of pitocin~ evil stuff). So my husband and I, while we don't blame ourselves, do feel that we take partial responsibility. Wow, didn't mean to write all that! Like I said, I'll be praying for you all!