Wednesday, January 5, 2011

Paying it Forward

I wanted to write Bridget's BPI Journey because there were so many wonderful parents out there willing to share their experience, I felt I needed to pay it forward. Every brachial plexus injury is different. There is no standard of care that works for every case.  Bridget had an outcome that is better than some. This is a glimpse of how she got here and a few of the things we learned along way.

Birth Day - Welcome to the World

Bridget was born in the fall of 2006.  I was induced in the morning.  Had normal progression of labor.  Started pushing at 5:00 PM.  Bridget was born at 6:50 PM, 8 pounds 11 ounces.

We experienced shoulder dystocia as Bridget became stuck in my pelvis.  As a result of this, she obtained a nerve injury that resulted in a paralyzed arm (Erb’s Palsy injury to C5 & C6 nerves in the brachial plexus) also classified as Right Obstetrical Brachial Plexus Injury or BPI for a more general term.  Basically, she had movement in her hand and wrist but was unable to bend her elbow or move her shoulder.

Bridget saw a neurologist in the hospital.  He explained that she had Erb’s Palsy and she should show improvement within 2 weeks.  He was hard to understand and I did not like his lack of explanation.  I was told to swaddle her arm and to make a follow up appointment with him after we left the hospital.  I figured I would research it as soon as I got home.


Coming home was a whirlwind.  Bridget was the first baby in the family in a long time.  It took me a good day or two before I could really sit down and research Erb’s Palsy.

My first google search terrified me.   The first dozen or so hits were all legal websites.  It took a little while, but then I found the UBPN.org and was able to educate myself.  Then, I had my first really good cry as Bridget’s mother.


The First Six Months


In the days that followed, I found a support group online and reached out to other parents to learn from their experiences.  Through UBPN.org, I found Eleanor, a local Physical Therapist who had treated other children with this type of injury.  Bridget was 17 days old when she met Eleanor.  Eleanor taught us how to do range of motion exercises on Bridget. Eleanor is our angel on earth. 

I cried daily for my daughter for the next few months.  I found the hardest for me was explaining to people how to properly hold my daughter and support her arm.  There were even a few instances where people took offense to my instruction. Even Santa was instructed not to let her arm dangle.

 



When Bridget was 3 months old, we started to see spontaneous recovery.  She was so happy with herself the first time she showed us that she could lift her hand horizontally.  Much of her recovery, we first observed while she slept.  If we had it to do over again, we would not have swaddled her arm past her second week of life.
 

When Bridget was four months old we went for a helmet consultation for positional plagiocephaly.  Bridget could only get her left hand in her mouth so she was becoming flat on the left side of her head.  During our consultation, Bridget bent her elbow for the first time.  We were ecstatic!  After my husband dropped us off at home he went back to work.  Bridget went down for a nap, and I sat at the kitchen table thinking about how amazing the day was. A ladybug crawled across the table…in January! It was my sign. Ladybugs have been my thing ever since.
  
Bridget did end up with a DOC Band (helmet).  She started wearing this when she was four months old.  She only had to wear it for 6 weeks.

During her spontaneous recovery, we tried many different techniques to assist Bridget.  We tried Kinesio taping.  After several weeks, Bridget’s skin became irritated and we stopped taping.



She also had a NMES unit that we would hook up to her once a day while she was in her high chair.  She didn’t seem to mind it one bit. 

We saw several specialists over the course of the next few months.  We had mixed feelings and wanted the opinion of someone who had no financial gain in cutting her open.  We then found The Brachial Plexus Program run by Dr. Scott Kozin at Shiner’s Hospital for Children in Philadelphia.  He has been monitoring her progress since she was five months old. After her first visit with Dr. Kozin, I stopped crying daily and had hope for the future - no matter what the outcome.  I knew she was in the right hands.  

Finding the right health care team for your child is very important.  Find the people that are right for you and your child.  You need to be able to talk to them and not hold back. Don't settle and go with your gut.

Activities During the Early Years

Along with the daily range of motion (ROM) exercises, we spent  as much time as possible on activities that would entice her to use both arms together and strengthen the injured arm. She became her best therapist with the right tools.

Here are some examples of activities we did with Bridget as a baby:
  • Lots of tummy time
  • Boppy pillow for tummy time and back support for sitting activities
  • Bumbo seat with tray and various infant toys on tray (prior to sitting up on her own)
  • Activity Mat with things hanging
  •  Excersaucer
  • Stickers.  Kids love stickers.  Would put large sticker on her good arm, ear, head etc. while restraining good arm.
When she was a little older we did things like:
  • Play-doh at the high chair. Hide things inside for her to find.
  •  Temporary tattoos. Strategically placed them near her elbow so she would have to turn her arm to show someone.  These were great because you could leave them on for a few days and place a few at one time in different spots to promote different positions.
  • Chose over sized toys that she was forced to used two hands to pick up (i.e. beach ball)
  • Toys that promoted crawling 
  • Signed her up for gym class once a week starting at 8 months (at the direction of her specialist and always supporting her scapula)
 




All of the above were run past her therapist or doctor prior to doing and she was age appropriate for each activity. I liked to mix it up so she never got bored with one particular activity. I also kept a basket of toys that she could only play with when we were doing ROM.

Tuesday, January 4, 2011

Righty is Different



When Bridget was old enough to understand, we encouraged her to call her right arm "Righty".  Sometime after her second birthday, she realized that Righty was different than Lefty. She knew she couldn't hold on to the monkey bars with Righty as long as she could with Lefty. 









She understood that we went to Eleanor each week for PT to work on Righty.  Often at the park she would ask for help getting Righty up onto the monkey bars.

Monday, January 3, 2011

Turning 3

Bridget made significant strides towards her recovery in the first years of her life. Largely in part from the physical therapy she received on a weekly basis.   Before her 3rd birthday, she was still unable to raise her elbow above her shoulder socket and tendon transfer surgery was recommended. We scheduled her surgery for November 3rd. 




I am not one to keep a diary, but I did type this up during this trip...

November 2, 2009

It is the eve of Bridget’s surgery.  We are in the hotel room. Everyone is asleep, except me.  I’ve been so busy all day packing and preparing.  I am physically exhausted, but can’t quiet my brain.  We have to be up in 6 hours.  We were told to be there at 7 AM to admitting.  She can’t drink past 5 AM (horrible).  Her surgery isn’t scheduled till 2:30 PM. How can you do that to a 3yo?  I’m sure they will give her something there, but it’s a long time for an adult, never mind a little one. 

Bridget has been taking today with stride.  She knows there is tension and everyone is excited for righty to be fixed.  This week she has gone from a toddler bed to a twin bed.  Her big-girl bed.  I was concerned that she would have trouble getting in an out of her toddler bed with the cast.  We also introduced a booster seat vs. a car seat today. With the cast, she would not fit in her regular car seat.  

Her younger brother, Jack, is sick with a nasty cough.  I pray that Bridget doesn’t wake up sick.  My mom is at the hotel with us. 

November 3, 2009

Bridget’s big day is upon us.  We go to the hospital at 7AM…pretty much hurry up and wait until surgery at 2:30… It’s 10:30 now and they just told her she could drink until 11AM.  Just in the nick of time.  She’s a juice junkie and is thrilled to get some juice.  She’s board.  She’s already watched TV, played in the play room, read books and is back at the TV.  She seems a little off today, but is being a brave, brave girl.  I couldn’t be more proud of her.

November 5, 2009

Bridget made it as far as the PreOp.  She looked flush as we were waiting.  I asked the nurse to take her temperature.  It was 101.5. After speaking with the anesthesiologist we opted not to have the surgery at that day.  We’re really glad we made that choice because she was throwing up a good part of the next day.

Her surgery was rescheduled for February.

Tendon Transfer Surgery

Bridget had her tendon transfer on February 23, 2010.  She knew what to expect this time around and went straight to the playroom after being admitted.  Her surgery wasn't scheduled until the afternoon.  Bridget had fun playing most of the day with mommy and daddy.

When it was finally time to get her hospital gown on she was played out and ended up falling asleep just before her transport to PreOp.  I don't remember exactly how long her surgery was, but she took a little extra time to wake up in recovery.  I think that is because she was so tired going in.  My husband, Bob, and I were a little stir crazy ourselves waiting for her to wake up.  We saw Dr. Kozin and was thrilled to hear that surgery went great.

  She was the last patient to leave recovery that day. She was transported back to her room sometime after 7:30 PM. She looked so small in her hospital bed.  She slept pretty good the first few hours.  Bob stayed overnight with her while I went back to the hotel with Mom and Jack.  I had seen pictures of kids with the "Statue of Liberty" cast before, but could not fathom the depth of the support bar. It looked huge the horizontal position. 



 



Sunday, January 2, 2011

Preparing for Surgery at Shriner's Hospital


Bridget was told that one day Dr. Kozin would help make Righty better.  She knew she would have an operation like Franklyn did on his shell (Franklin goes to the Hospital - great book). She had a medical play set and each one of her toys eventually had a bandage on.  We used language that she understood.  Terms like, sleep medicine, cast, and tube (for IV) to name a few. The appointment prior to her surgery we were able to get a tour of the floor Bridget would be on.  She loved it (especially the play room). We never pushed the topic on Bridget or told her too much in one sitting.  She came to us with questions and was very comfortable with the idea of surgery. We always made sure we talked about all the things that she will be able to do with Righty.  Her personal favorite was to be able to reach the the monkey bars all by herself. 

Books We Read to Bridget:
  • Franklyn Goes to the Hospital
  • Clifford Visits the Hospital
  • Curious George Goes to the Hospital
  • Going to the Hospital
 
Clothes to Fit Over the Cast:
2-3 sizes bigger worked pretty great as long as there was stretch in the fabric.  Had great luck at the Children's Place. Anything that zips or buttons up worked really great too.  Purchased many over sized tee shirts.  The cast makes them pretty warm. She had an over sized vest an hoodie and that was plenty. 


Car Seat:
Much like taking our new born home for the first time Shriner's gave us a car seat check.  Bridget is a tall girl and we decided on a Gracco Turbo Booster Seat vs. a standard car seat.  You have to be at least 3 for a booster. Shriner's has a car seat lending program so if what you bring doesn't work, they can help out.

Saturday, January 1, 2011

The Months Following Surgery

Bridget was in a cast for 4 weeks. She was a trooper and only complained once in 4 weeks.  It was business as usual except no bath.  She got use to the daily sponge baths and enjoyed having her hair washed every few days at the sink.  I would clear off the kitchen counter and roll a towel to support her neck.

Her cast came off on a Monday. She was fitted for a brace that kept Righty in the Statue of Liberty position.  She wore the brace for approximately 8 weeks.  She had to wear a stocking on her arm so it wouldn't stick to the brace as well as a special undershirt. She would call the stocking, "socko the taco" (the things that a three year old can come up with).  She received therapy at the hospital two times a day for that whole week.  They were really great in scheduling her therapy.  She would have a session late morning, lunch and then another session and were back home before rush hour.

In the weeks that followed, she saw Eleanor twice a week and eventually resumed once a week sessions.



Three months after surgery Bridget achieved her wish for Righty. She was able to reach the monkey bars all by herself for the first time.

I get emotional every time I think of Dr. Kozin and the excellent staff at Shriner's Hospital. They truly love their jobs and it shows. Thank you just doesn't seem big enough for what he gave to Bridget.  We will be forever grateful.

It's been almost a year since Bridget's surgery.  She is doing great. She is still getting PT on a weekly basis. She is working on strengthening and positioning Righty.

Friday, December 31, 2010

Awareness is Key

I found out much later that these types of injuries to newborns can easily be prevented.  If I knew then what I know now. Awareness is key. That is why we let Bridget be filmed for these two videos.  This 5 minute clip is very informative.


There was a 25 minute documentary (or full version of this clip) made.  Here is a link to view it. 
(I will warn you, there are shots of actual births in the long version.)
She is in both videos for a few seconds, Bridget is playing at a park wearing purple.  She was 2 1/2 when this was filmed.