As he continues to grow

Everyday I continue to be amazed by my beautiful boy. His first birthday is coming up in the next couple of days and he continues to progress in the treatment he is receiving.

Spencer has had a follow up surgical consult with Dr. Janelle and Dr. Saran at Shriner’s Hospital in Montreal. After conversations that took place in French–me trying to follow to no avail–it was concluded that he will require an MRI C-Spine for his nerves. They want to have a look see at the Brachial Plexus area. Then he will have a Shoulder Ultra-sound to have a look see at the joint area. Spencer continues to make improvement and for the most part has strong elbow and wrist flexion, but there are concerns about the shoulder. Then they want to have a look see at the Diaphragm, so they are doing a fluoruscopy of the diaphragm. She explained to me why they need to do this–but at this moment I’ve forgotten why :-S

We will find out next week hopefully when he will go for these assessments. This will not be done at Shriner’s Hospital but at Sainte-Justine Hospital Centre. I suspect this will be a full day event. They will do all three tests together instead of coming in for each assessment. Once those have been read over a plan of action will be put in place.

I continue to have mixed emotions about the whole process. With his birthday fast approaching I am going through an emotional roller coaster of rage and bliss. I am angry that this has happened to him but I am very much impressed with how Spencer continues to grow and develop.

I read a lot of personal stories and medical literature on Brachial Plexus Birth Injuries–I feel it’s important to have the support from other parents who have come through this process and I also feel it’s important to be informed of the various treatments and keep up to date on different medical approaches. However, through reading the personal stories and different medical texts I become frustrated because it seems like everything is always negative. I know there are various degrees of injury and each case is different so I need to keep that in mind. I want people to know that while there are some issues that come along with Erb’s that not every case and development is bound to be so delayed.

We continue to move forward and I continue to be totally amazed at Spencer’s development. He’s been walking for weeks now–both my kids are early walkers (my daughter was walking at 11 months too) and I am noticing that he is starting to string sounds together that sound like words and sing songy sentences. Spencer is a very clever boy–there is no fooling him with guessing games or any of the other hide and seek games. He see’s right through them.

Anyways–On Saturday he turn’s 1 and we will celebrate this milestone quietly and reflect on all that has happened to us over this past year. We will love him and hug him and celebrate the small and big steps he has achieved.

Update on Spencer’s Progress

So after an anxious 3 month wait for the end of work and a 20 hour flight back to Canada we have made it to our new city of residence—Montreal, Quebec. We chose to move Montreal because of the great reputation of the city as a vibrant and colourful atmosphere. We also decided to move here because of the wonderful reputation of Shriner’s Hospital.

We met with Dr. Chantal Janelle and an OT Nathalie. We had our first visit last Thursday. On our first visit there was a lot of observation and talk about steps and diagnosis for Spencer; nothing concrete about what to do other than a stretch and follow up OT appointment on the Tuesday. We were given a stretch to work on some external rotation. It’s called the Chicken Wing stretch. We pull the arm down tight to the side of the body and then stretch at the elbow in a chicken wing position. He will have to do this stretch for the rest of his life. He hated it at first, until I found a way to distract him while I did the stretch. This is pretty difficult with an active 9 month old. Although most parents are excited about their child walking and they do everything they can to encourage walking, it was suggested that in order to strengthen the shoulder and rotation of the shoulder that I should try and delay the walking and encourage more crawling. Spencer crawls very fast. Sometimes he uses the combat crawl and other times he pushes up on the arm like ‘normal’ crawling. Obviously this is the ideal crawl but any crawl that encourages the shoulder rotation is being encouraged.

We followed up with the OT appointment after 5 days of stretching. Nathalie was pleased to see some relaxing of the muscles—they were not as tight—and she was encouraged by this result. She then did the Toronto Active Movement Scale. Spencer scored 2.5 on the scale; therefore he failed the test. This means that he will more likely require surgery—either exploratory or possibly grafting. This will be decided in the coming months after consultation with Dr. Janelle. Nathalie then showed us two more stretches to encourage movement. The first is to encourage proper movement among the scapula. We hold down the muscle under the arm and stretch like the chicken wing and then up into a 45 degree angle. This is done while Spencer is sitting on my knee. The other stretch is to encourage the wrist rotation. We have to hold on to the two bones and then rotate in and out without overstretching the wrists.

We have a follow up OT appointment on Friday. Spencer will be getting fitted for a Splint to encourage the fingers to stretch out. It’s been hard today as Spencer is moving forward with wanting to stand up. The poor little guy has nothing but bruises all over his face from falling. Not only this but he’s got a bad rash going on, I will have to pull out the cornstarch for this.

Overall, while the decision to move back to Canada has come with mixed emotions I am pleased with our decision to make the move. I loved our life in Shanghai and I don’t regret any of it; however I love being back home. I have enjoyed all the delicious food that I have missed while overseas. We are subletting from someone who is travelling for the summer and she left us a patio garden to use as we please, so tomatoes, lettuce, squash, beets, green beans and cucumbers have been growing on the balcony.

Pictures will follow our appointment on Friday.

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

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