Brachial Plexus Birth Palsy Update

Right arm Brachial Plexus injury

A couple of months ago our soccer coach, who is also our Physical Therapist, told me he noticed that Tater Tot's arm (the right one) was drawing in a little more lately.  Our coach, Jeff, always works with TT during soccer and he said it looked as if his elbow was getting stuck in the joint, not allowing him to straighten it as much as he could.  

See, my son can't straighten his arm.  It stays in the slightly bent position due to nerve damage to his shoulder (brachial plexus) caused by a birth injury.

This nerve damage caused my baby to be paralyzed at birth and begin a heartbreaking journey for us. 

His right arm was completely dead with no movement from damage to the nerves running from his spinal cord during the birth process.  He was born cupping his face, which resulted in his being stuck in the birth canal.  It was an emergency situation and we both are lucky to be alive today.

At 5 months old, he was put on a prayer chain and in an absolute miracle, raised his arm the next morning.  You can read about it here.

Anyway, after the soccer coach mentioned this slight difference in Tator, we made an appointment with an orthopedic doctor that looked at him during the sports physicals at school.

We went to see the doctor yesterday and he told us that the radial bone in his forearm was not aligned with the ball of his elbow (I hope I explained that right).  He mentioned that there is a new pediatric orthopedist that's coming to Tulsa in the next couple of months and he would be a great doctor to see for TT.  He said there might be a tendon release surgery that could be performed on TT's arm and it might release those tight tendons, allowing him to straighten his arm more.   I looked at TT when he was saying this and he was trying not to look worried, but I knew he was.  He was having a hard time in the car when we left the appointment. 

Tater Tot turned to me and said, "My arm will never be better."

That broke my heart for him.  You see...as a mother...all I've ever wanted is for him to never feel pain, suffering or any anguish from this injury.  At 12 though, Tater Tot is starting to really figure out what's going on with his arm and that makes me so sad.  Granted, I'm so thankful that he has as much movement as he currently does, but I still hurt for him. 

We'll start intensive physical therapy in the next week or so and then see the new pediatric orthopedist at the end of the summer to see what they can do for Tater's arm.  I honestly just hope and pray that the therapy helps and he doesn't have to have surgery.  That is my prayer for this summer.  I'm linking up with Kelly's Korner Blog in hopes that people will pray for my sweet son.  We could really use it right now.

Thankful Thursday

I'm thankful for Small Fry and Tater Tot - they are the best 2 things

that have ever happened to this Hautemama

I have a lot to be thankful for on this Thursday.  I recently read about a wonderful blogger that just found out some heartwrenching news about her baby that she's expecting in a couple of months.  Please pray for Megan and keep her in your prayers as she carries her baby that may have many medical problems when born.

I feel especially sad for her because I too went through a heartbreaking situation with my first born.  My son got stuck in the birth canal while being born.  His hand was cupping his face and his arm and nerves from his spinal cord were damaged during the birthing process.  He suffered a brachial plexus injury, also known as Erb's Palsy or Brachial Plexus Birth Palsy.  His right arm and even the right side of his face were completely paralyzed until he was five months old.  He started physical therapy when he was four days old.  The sheer sadness and absolute heartbreak of having a child with a life-long injury is something I wouldn't wish on my worst enemy.  It destroyed me for quite a while; insomnia, depression and just utter confusion as to what went wrong. 

This was in 1999, when the internet had only been around for what seemed like a couple of years.  I remember bringing him home and sitting up every night, all night long researching on the internet anything I could find that would help him.  There wasn't very much information, and blogs definitely weren't an option.  What a wonderful tool that would have been to reach family and friends about news on my little Tater Tot.

I consider him an absolute miracle.  His great-grandma put him on a prayer chain at her church one Sunday and called to tell me about it.  I politely thanked her and told her I really appreciated it, hung up the phone and thought that it was sweet, but I wasn't getting my hopes up.  That's the point I was at...I was beaten and spent every moment questioning myself.  Did I do something to cause it? Did I do something wrong while pushing?  Was it something I didn't do while I was pregnant???

The next morning after the prayer chain went out, I got up to feed my little sweetie, while his Daddy was getting dressed for work.  I finished nursing him and I laid him down on the bed and turned to tell my husband something.  When I turned back around, our baby had his paralyzed arm straight up in the air.  I remember blinking and turning to my husband but I couldn't say a word.  My jaw dropped.  I looked back at his arm and it was still in the air. 

I turned to his Daddy and said, "Do you see that?"

He replied, "I do, but I don't believe it!"

I think we must have stood there for what seemed like 30 minutes. 

My little baby was lowering and raising his arm up in the sky.

It was more than I could have ever asked for.  He was moving his arm.

I immediately called my Mom, my mother-in-law and the great-grandma that had put him on the prayer list.  They were so happy and grateful!  His great-grandma told me, "See honey, prayer does work!"  I told her it definitely did and I would always tell anyone that asked about my little miracle that he was healed by a prayer chain, so don't ever doubt that they work. 

God has a plan and he listens to everything we ask of him. Sometimes, the plan may not be clear, but eventually it will become clear.

I have to say that I am most thankful for that one moment in my life.  Granted, Tater Tot had to continue therapy and he will never have 100% movement in that arm, but he is considered by many of the Brachial Plexus doctors to be an extremely blessed child to even be able to move his arm at all.  His only challenge now at 11 years old is that he can't straighten his arm or lift it up in the air correctly, but people hardly even notice his "lucky fin", as we call it. (If you have a child, you will know about the lucky fin that Nemo had in Finding Nemo).

What I didn't realize then is that by having Tater Tot in therapy all these years with kids who have cerebral palsy, down's syndrome and a host of other challenges, he has learned the great gift of sensitivity and humility.  He never stares or comments when he sees anyone with a disability or a challenge.  That's a wonderful gift to learn at such a young age.

Tater Tot at the Shriner's Hospital in Philadelphia with his wonderful Doctors and Therapist

When I was a single mom, we had a new neighbor move in one day and he stopped in the backyard and talked to us across the fence.  About 30 minutes after we introduced ourselves and started talking, Steve, our new neighbor said to both of my sons, "Why haven't you guys asked about my leg that's missing?" He was walking on his crutches and didn't have his prothesis on that day.

Tater Tot piped up, "We didn't ask about it because just 'cause you're missing a leg doesn't mean you aren't a good person." 

Our neighbor smiled really big and said, "That's a good little guy you've got there!" 

At that moment, it all became clear in my mind.  I had a little boy (who was 5 at the time), that never saw disabilities.  He understood that people are the same, no matter what they look like or what they may be facing.  He has compassion and that's one of the greatest gifts he could've ever learned.  For that, I am very forever thankful.

  Hautemama

Where was blogging 10 years ago?

When my firstborn son was injured during birth and his entire right arm was paralyzed, I spent hours on the internet trying to research anything about his injury. It's known as a Brachial Plexus Injury or Brachial Plexus Birth Palsy. Also Erb's Palsy. The only site I could find was a mother that had a daughter who suffered from the same thing. Her website was very helpful but there was no way to email her or get in touch with her to ask questions. You see, my son's injury is known as a "rare disability", which means there are very few doctors or physical therapists that deal with this type of issue. We were sent to a physical therapist in Tulsa that did specialize in Brachial Plexus when Tyler was a mere 4 days old. I wasn't even sure what was going on, I was in such shock. At that first therapist appointment, it was the first time I heard anyone refer to the injury as life-long. Life-long? Doesn't that mean you never recover? Doesn't that mean it lasts forever? To be honest, I spent every night, all night on the internet and found very little information to help me. It was the loneliest time of my life. Period. I had a husband who chose to deal with it by ignoring it. He would just tell me it would be alright and that I was overreacting. I knew that it was much more. I knew I had to be proactive and figure out a plan. I eventually found one other Mom through our therapist that had a son with a Brachial Plexus injury. We had each other to talk to and that helped so much. But, this was late 1998 and the internet just wasn't what it is today. Very few people considered the internet the place to look for information and bonding.

I was so moved watching Kelly Stamps @ Kellyskornerblog.com receive so much encouragement and support from the blog world when her daughter was born with pneumonia and had to be hospitalized. I honestly think that the kindness of strangers had to be so moving for the Stamps family as they spent 3 weeks in the NICU here at Saint Francis Hospital in Tulsa.

I takes me back to the many lonely nights I spent terrified that my child would never move his arm. I didn't know what doctors to contact or what plan of action was the best. If the blog world had been around, I truly believe that all of the kind mothers out there would have made our journey a lot less scary and empty feeling.

It's now 10 years after my son was born and he is doing so well. He has close to 90% movement in his arm and loves all sports. I think the sacrifice of researching many days and nights has paid off, but it would have been so much more comforting to take my blog friends along for the ride.

The miracle of my son will be told in an upcoming post. Get ready to experience some goosebumps. And here's a hint.....prayer does work!

A Tough Decision in a Bad Economy

I just read on Kellyskornerblog.com that Kelly has decided to stay home with sweet little Harper. I knew she would. It seems so much harder to leave a child at a daycare and go back to work after having a sick newborn. I know because it happened to me. My son Tyler suffered a birth injury during the birthing process and has Erb's Palsy or what is known as Brachial Plexus Birth Palsy. In other words, his right arm and shoulder were completely paralyzed from an injury during birth. The injury has since recovered in a way that gives my son about 85% movement in his arm (thanks to a prayer chain but that's for another post). The moment I was told by the doctors that he was injured was one of the single most terrifying seconds of my life. I always felt like I was robbed of the innocence of giving birth for the first time. Instead of bringing the baby home to excited relatives and friends, we were immediately sent to a physical therapy appointment. I can still remember the ride home from the first therapy appointment, I thought I would die from guilt, sadness, shock, you name it, I was feeling it. The thought of going back to work was horrifying to me. I just wanted to spend time with my baby. A new mother feels protective even in the most wonderful birth experiences. When the birth experience takes a turn into something traumatic, the mother lion instinct kicks in. You want nothing more than to spend every second guarding your child so that nothing else can happen.

I've wondered about Kelly's situation and knowing how much she wanted that baby and how truly excited she was for her birth, I knew she would never be able to go back to work. I think she will make a wonderful, loving, caring mother. I'm so excited for her and in all honesty, I'm secretly jealous. Not in a bad way, but just wish my circumstances were a little different and I could stay home with my boys.