What is Erb’s Palsy?

As I move through this journey of understanding I am beginning to see what this injury is and how it could really have been prevented had the doctor listened to me from the beginning.

Erb’s Palsy, or Brachial Plexus Injury, is a result of damage to the Brachial Plexus Nerve centre. This nerve centre is located along the spinal cord area just by the nexk and shoulder. I have often read many explainations about C5, C6, C7, C8 and T1. However, for me-the none scientist-it was all gobilty goo speak. They might as well have been speaking in tongues. I’m a visual person, so when a support group that I joined posted a visual of exactly how these C5-8 and T1 affect the arm I had some deeper understanding. If the C5 is injured then the shoulder is affected. If the C6 is injured then the bicep is affected. If the C7 is injured then some of the bicep and forearm and wrist are affected. If the C8 and T1 are affected then the hand is injured–and this is more of Klumpke Palsy. From my personal observations I can say that all of the nerves were stretched during the delivery. Spencer’s arm was not functioning at all upon his birth.

Erb’s Palsy happens when a baby gets ‘stuck’ and needs to pulled out. Often the OBGYN will use extraction methods like forceps and vacuum suction. Or in my case the doctor pulled on Spencer and a nurse pushed down on my stomach. He pulled so hard that the nerves were stretched and now our son may have a disability for the rest of his life that was caused by someone who thought it was okay to deliver a baby on your back.

Erb’s can be prevented and had I known that this condition could exist I would have fought harder with my birth plan and I would have had Peter fight harder when I could not fight. I had wanted to have a smooth delivery with either me in a squatting position or on my back. I had researched many things–but especially how to birth a large baby. Spencer was measuring large in all my ultrasounds. All the midwifery websites and birthing websites suggested that for large babies one should birth in a squatting or on my knees position so that the baby would not get stuck. When I suggested this to the doctor he said that the hospital where I was going to be giving birth does not support this type of delivery. That should have been a red flag I should not have ignored. In all my research about large babies there was no mention of Erb’s Palsy. They talked about macrosomia and all the health complications like high or low glucose levels, trouble breathing but they never once mentioned Erbs or Brachial Palsy. So for all you mom’s out there searching the internet about how to birth large babies I hope you come across this post and really fight for your birth plan.

To sum it all up about prevention I would say the following to any expecting mothers:

1. Don’t give birth with your legs up in the air and you on your back. Your baby may get stuck as this is the most narrow and dis-functional way of giving birth.

2. If your baby is measuring large and you’re not sure about ways to give birth I would suggest you look at c-sections and alternative birthing positions for large babies–ie on your knees.

3. If your doctor does not wish to follow your birth plan walk away. That is a red flag that they are not respectful of your wishes or your concerns. This is your birth. You should enjoy this wonderful time and you should do it your way.

For further information about Brachial Plexus Nerve Injuries I would suggest the following links:

United Brachial Plexus Network

Erb’s Palsy Group (UK based)

ERBS Palsy Friends and Family (Ireland based)

Dr. Howard Clarke (Sick Kids Toronto) –he created the Toronto Scale

Shriner’s Hospital

Dr. Rahul Nath -Texas Nerve Institute – he is world renowned for his work

Spencer update

Spencer is now 5 1/2 months old. He continues to show improvement. There is muscle development extending beyond his elbow–or what appears to be–which I will check with the doctor in a few weeks when we go for a check up. Every day we see little improvements. His wrist no longer lies limp, and there seems to be subtle movement there. He also is beginning to relax his fingers. I have noticed that his right arm looks shorter but I’m not sure if this is because his fingers are curled up still or if it’s actually shorter. I will get this measured when we see the doctor as well.

On an emotional level I still continue to struggle with what has happened. I’m constantly seeking answers. I still struggle to watch videos of other children who have suffered the same injury but I know I must connect with these other parents as there is not enough information out there.

I recently got the courage to watch a PBS documentary about OBPI. I went to go watch it shortly after Spencer’s delivery but the trauma was still too fresh in my mind. Again, I started to watch it but I knew I had to finish it so that I could judge it as good information to share with everyone. It does have a lot of information and it does talk about some of the stuff I advocated for but was denied due to cultural misunderstanding. If you have a moment, please watch it here.

My next blog post is going to talk about what OBPI is and how it can be prevented.

Everyday it’s the little things

Ever since Spencer was 2 weeks old and back in our loving home I noticed the little improvements. Today is yet another little improvement that I noticed. Usually he clenches his fingers like all newborns do-his left fingers have become stretched out as is normal in physical development but his right fingers remained in a fist. However, today we noticed the relaxing of the fingers.

The little movements started when he was two weeks old. He started with the gripping. When we placed our finger in his right hand there were signs of tightening. Shortly after we noticed the strength in his grip we started to noticed his shoulder move when he squirmed. Everyday we continued to massage and move Spencer’s right arm and everyday we started to notice muscle definition. Then he started to raise his arm-straight at first and then he started to bend. His wrist continued to be limp so we focused in on building the muscled and strength in this area. In the past couple of days we’ve noticed strength and movement return to this area. As stated above today we noticed finger relaxing and curling.

Yesterday we went to the doctor for the 4 month check-up and needles. During the check-up we had the pediatrician do a thorough exam. We asked to check for muscle loss/compensation and signs of “winging” as well as what his thoughts were on Spencer’s chance of full recovery. According to the doctor there is no muscle loss or muscle compensation. Spencer is using his muscles correctly as he gains control through nerve rejuvenation. He checked over the shoulder blades and said that the muscles were working correctly in that area so that winging would probably not occur. He said that with the showing of recovery at this stage that we need to continue to wait to see if he’s going to have full to almost full range of motion. I am hopeful and thinking positively about it and I hope that with these positive thoughts and support from my communities that Spencer will make that recovery I so desire. Today’s little movement gives me so much hope.

 

Happy 4 months

And in honour of Spencer turning 4 months old I have done a video of his progress to date with his little arm.

Spencer’s Right Erb’s Palsy

 

Home at last!

Only after 9 days were we able to bring our little bundle of joy home. We were still left with a lot of questions about what to do with our injured child. When we left the hospital we were told to ‘massage’ the arm but nothing further. I knew that we needed to get moving on his healing process with extra exercise and additional therapies. And so began the hunt for online resources and communities. Living in China we are limited in where we can take him–as our Chinese is very limited and the English resources are few and far between.

Through our research we discovered that Spencer can make a full recovery if certain signs are there and with early intervention. We would have to be diligent about exercises and massaging his right arm. I searched high and low for information about Range of Motion exercises. I was only able to find one instructional pamphlet for infants and a few videos aimed at older children. I read over the pamphlet and searched on massage techniques for infants. I felt confident in my ability to get started on the healing process.

In the first week of Spencer being home we started to notice a gripping grasp in his right hand. If we placed our finger in his right hand he would tighten his grip. Albeit, it wasn’t noticeable to the naked eye, we could feel the slight tightening. We continued to massage and do ROM exercises throughout the day. Every day we noticed a tighter grasp and in about the 4th week mark we notice him begin to move his shoulder up and down.

By this time we had begun to see a Pediatrician, but not a specialist. He looked over Spencer’s arm and with every visit there seemed to be improvement. Our doctor said that he showed signs of making a full recovery. This was great news for us, but we knew we still had a lot of work a head of us if Spencer was to make the full recovery. So we continued to search for information online. We became ever increasingly frustrated with our search results. A lot of searching resulted in legal advice and not much in the way of help.

By the second month Spencer started to move his arm up and down–only slightly–from the shoulder. There was no bending at the elbow and when I did exercises with him I noticed that resistance was starting to set in. It meant that his arm was beginning to have working muscles. By about Christmas time we noticed that when he lifted his arm, Spencer was beginning to bend at his elbow, albeit a slight bend.

We continued our massaging and exercises and by mid January we noticed a full bend of his own and he has even begun sucking on his arm. He will push with his right hand up to his face using his left hand. He will force his right fingers into his mouth with his left hand. When Spencer lifts with his right arm he can now raise it–laying down on back–to about ear level.

I only hope that with our continued early intervention that the healing process continues. I have found an online parents group for Erb Palsy and I hope that through my interaction with them that I will find further information for Spencer’s continued healing.

Here’s a video of us working together to strength his arm: Some exercise

Spencer’s first few weeks of life

I left off with Spencer in the NICU at Fudan Children’s Hospital. I wasn’t able to transport with Spencer to the NICU as I was suffering my own birthing trauma. So Peter was the one to ride along with the Shanghai ambulance. In the 4 years we have been here this ranks up pretty high on Peter’s awesome list. Unlike the ambulance services in Canada, the traffic does not pull over for you. It is also a small little van that is empty on the inside except for the equipment. It is often said that you are better off taking a taxi to the hospital than a Shanghai ambulance. So off to Fudan Spencer went.

During his 9 days there he was subjected to a range of tests and specialists. It was an odd walk into the hospital (we paid for the VIP service). We had to walk past this waiting room that was full of concerned parents and grandparents, we had to use a special key card-which prompted some looks–and then we had to suit up. I don’t know what the ICU wards are like back home (thank goodness we’ve never had to enter one until now) but the ‘blue smock’ we had to wear was the same one that many people wore. It wasn’t very sanitary. We had to walk past two rooms of about 15 newborns in each room until we came to Spencer’s room. It was heartbreaking to see all these babies hooked up to various machines for various reasons. You never know how much can go wrong with a baby.

I knew that Spencer had experienced a lot of trauma. His body told me so on the outside. He was swollen and bruised on his chest. I was in an emotional state because of his injury and trauma. The last thing I want to hear from any of the nurses or doctors is to tell me ‘not to worry’ or ‘no need to cry’ because he’ll be okay. They needed to let me have my breakdown. I also don’t want to be told that my baby is fat. Yes he was born 4.65kg (10.25lbs) but that still doesn’t mean that he’s ‘fat’. Peter and I were always told that Spencer was fat. It didn’t make me feel any better about the situation.

We were the only parents in the NICU visiting their child (really the only one paying to have the ‘right’ to be with our child). Peter and I must have looked like some foolish people. We would go to the hospital to visit Spencer at 2:00pm and stay until about 7 or 8pm. We would sit for 5 hours just staring into his incubator, talking to him, touching him and talking to each other.

At first he looked like he had gone through quite a battlefield, but with every visit he improved. The swelling went down, his breathing returned to normal, his glucose levels subsided to normal and he started to become aware of his surroundings. When we first started going all he did was sleep–he only woke up to feed–and only because he was being awakened for the feedings. I started to produce milk about 4 to 5 days after the birth but until then they were feeding him formula. This was against my wishes as I had planned to give him the most important feed of his life-the colostrum which is produced before breast milk to give babies a one up on life. Unfortunately, this was not to happen. Instead, our son had to endure Nestle milk formula until I started to produce milk. For those of you who do not know about the Nestle milk formula scandal in some African nations I suggest you get yourself informed. I was able to bring in the breast milk once it started coming down and I was able to feed Spencer when I was at the hospital. Unfortunately, because he was no allowed out of his cage aka incubator I had to rely on bottle feeding–fortunately, it was my breast milk after a few days.

Everyday there was improvement with Spencer, but everyday there were new battles with the nurses and doctors to get him home. Test upon test showed some abnormalities in one form or another. First there was the glucose levels. They were elevated-again we were told because our baby was fat he had high glucose levels. Then his breathing was rapid and abnormal, so assisted breathing was required. Then there were the heart functions, valves were not closed properly so they had to give him heart medication to help close the valves.

While some of the children sat around in their incubators with the only interactions from the nurses and doctors, Spencer received a lot of one on one attention from us. I truly believe with all my heart that because we were there talking and touching him that improvements were made everyday in his battles. I knew that if we could just get him home that the real magic and real improvement would take place. I really needed to have Spencer home for both our healing progress. So after much debate and argument with doctors and nurses we were able to bring Spencer home from the hospital. The real healing would begin.

Spencer’s Birth Story

I thought I would share with the world how Spencer came to have what is called Erb Palsy. For those of you who do not know what Erb Palsy is, it is a nerve injury. Some, if not most, cases are a result of an injury during the birthing process. Some cases are a result of some trauma to the body. Either way it results in damage to the Brachial Plexus Nerve Network-the system that controls movement and feelings in the arms and fingers. I am only becoming aware of what Erb Palsy is and how it will affect our son. We are an expat couple living in Shanghai; therefore our information and resources are limited here. We rely a lot on what we can find on the internet, from our good friends back home who ask questions on our behalf (and a good friend who is a pediatrician) and by asking questions of our pediatrician here (he’s Hong Kong born, Aussie trained doctor).

Spencer was born September 2011. Unlike back home in Canada, every time I went for a prenatal check up I would get an ultrasound. At first everything seemed normal and on schedule. It wasn’t until about the seventh month that my Doctor started making comments about how big my son was. Everything was normal-even the testing for Downs and Spina bifida and all his organs were in check. He had 10 fingers, 10 toes, a strong heart and strong organs. At first we often joked about how big he was growing. People often commented on me always looking ready to pop. My plan was to deliver naturally. I had delivered my daughter-14 years ago-vaginally so I knew I had it in me to do it. As the due date drew closer and I started to move into a bi-weekly visits and ultra sound images more comments were made about how big my son was getting. It was always done in a joking way and never a serious moment from my doctor. It wasn’t until about the 35th week that I began to become worried about how big my son was measuring-he was measuring for a 38 week term baby.

I was freaking out on the inside because, let’s face it, who really wants to deliver a large baby vaginally? However, on the outside, like my doctor, I was laughing and joking about the whole thing. The whole time all I kept thinking about was my poor vagina. Is it going to be able to unload this big baby naturally or am I going to have to do the dreaded c-section? It was even more frustrating as trying to communicate my birth plan with my OBGYN was very must a battle of school of thoughts. I had a birth plan in mind and had I had my choice I would have done a relaxing home birth but home birthing is not an option when living in China. My next best option was a clinic that specialized in women’s reproductive health. I settled on the American Sino OB/GYN Clinic that has an in-patient VIP floor at a local hospital down the street from it’s out-patient clinic. As my delivery date drew closer I started to notice that some of my birth plan options were not going to be honoured. One of the options was a quasi lotus birth where I wanted to deliver my placenta naturally and allow for my son’s lungs and heart to naturally function without the forced entry into the world. This was not to happen as my doctor thought it wasn’t healthy. I knew there had to be some compromising around Spencer’s delivery. However, I was adamant that under no circumstances was I to be cut open unless there was complications to my son. In hindsight I wonder if a c-section would have stopped my son from getting the shoulder dystocia and Erb palsy? I will never know but I can’t dwell on this minor fact.

So birth day arrived. My contractions started out pretty normal, pretty much how I remembered them with my first child, painful menstral cramping sensations. I had been experiencing strong braxton hicks for quite some time but when I saw the bloody show and an increase in pain I knew I was in the beginning stages of labour. It was pretty much normal in that I had strong contractions every 30 mins but short, weaker contractions between the 30 mins. After a few hours of this type of labour we decided to call my OBGYN. He asked us to check into the in-patient clinic. I was feeling perfectly fine, no light headness nor shortness of breath. I wasn’t in too much pain either, considering I was in labour. Once I was admitted they checked my blood pressure and did a urine protein reading. According to the blood pressure and urine reading I was showing signs of severe pre-clampsia. Again, there was no concern about this during my pre-natal care check up. Another one of my birth plan requests was not to use drugs as I had planned to do the breast crawl upon delivery. In order for this to be successful the baby must be drug free. However, because of my pre-clampsia, they induced me using Pitocin. When they gave me the injection they informed me that they were using a drug to ‘reduce my blood pressure and open up my cervix’ and it wasn’t until well after I left the hospital that I discovered they used Pitocin on me. It is actually quite a painful drug to take and my arm felt pain for a few days after the delivery. Needless to say once the Pitocin was in me the real labour began.

Waves of pain overcame me and the contractions took on a whole new meaning. I had not had any pain relief medication and I had opted out of a epidural (I had one with my first child and didn’t feel the birth and I wanted to feel this one). About 2.5 hours later Spencer was on the cusp of being delivered but it appeared something was wrong. He got stuck and wasn’t coming out. I could feel the doctor just rotating him around trying to pull him out. The nurses were pushing on my stomach and finally he came out. I knew something was wrong because they didn’t bring him over to me as I had requested. I wasn’t in pain anymore and all I wanted to do was hold my new baby. The doctor began repairing me while the nurse and pediatrician looked over my son. My husband stayed with Spencer while I remained in the room. I was suffering a 4th degree perineal tear. My husband noticed right away that there was something wrong with Spencer’s arm. It wasn’t moving around like his other arm. They wheeled him out of my birth in room to the nursery. He was placed in an incubator and I was told that he wasn’t breathing well enough on his own.

Once the doctor had finished fixing me up and was able to check in on Spencer he returned to tell us the news. These are his exact words-we will never forget what he said to us-“This is a doctor’s worst nightmare, it looks like Spencer’s right arm has been injured, probably shoulder dystocia” We were devastated. Who wants to hear those words come out of the mouth of your attending physician. Thank goodness we had been in China for 4 years and understood the dramatics that come from such occasions. However, my battle with Chinese doctors had only begun.

First, there was my desire to breast feed from the onset. When we did the tour of the hospital floor one odd thing stuck out, and that was that they were proud to offer us imported infant formula. Due to recent scandals about Chinese infant formula a lot of new parents were keen to buy imported formulas. I had no desire to ever give Spencer formula. I had actually planned the breast crawl but because of the injury he couldn’t do the breast crawl. I was desperate to start the bonding process with Spencer and start breastfeeding. The doctor’s said Spencer’s glucose levels were so high and his breathing was so low that they had to give him sugar water (again against my birth plan wishes) and formula (very much against my birth plan wishes). My husband fought them up and down about formula and informed them that I was to start breastfeeding Spencer. The doctors then became very worried about his breathing therefore I was not allowed to breastfeed Spencer (they gave him formula against my wishes). The hospital did not even offer a pump nor did they tell me how to store the colstrum (I found this out online after the fact). They wanted him to be seen by doctors at Fudan Children’s Hospital. So after many consultations, Spencer was sent over to Fudan’s Neo-natal Intensive Care Unit.

He spent 9 days in the NICU and of those 9 days we could only seem him for 5 days. Again, unlike in other countries, parents are not encouraged to bond with their child while in the NICU. No I shouldn’t say that, if you can afford to pay the VIP prices, then you can bond with your child in the NICU, but if like many Chinese you can’t afford to pay the VIP prices then you don’t get the opportunity to bond with your child in the NICU. Due to my observations of China I understand why this doesn’t happen however it still disheartening to hear and see all those parents waiting behind glass windows hoping to hear good news about their child. After many pediatricians and specialists Spencer’s injury was finally diagnosed as Erb Palsy and the prognosis looked good.

Once we got Spencer home the real healing began. From this moment on I will break his healing journey down and hopefully give parents information about what they can do if they ever find themselves in this situation.