Thursday, November 8, 2012

This one is personal

When given the opportunity to write this post regarding the Hospital of Special Surgery  and tell about my personal experience with a child needing physical therapy/rehab/surgery etc., I was like, "yes! I would love to!". Then, I was like "No, it's too personal and emotional for me". THEN, when I thought about (one) a donation will be made to a charity of my choosing AND it may help someone else going through a similar situation, I knew I wanted to write the post and share our story.  So yeah, this one is personal.

When pregnant with my 1st child, I was over the moon. I was so excited to have a baby!  I had the common worries that I think everyone goes through, but ultrasound and check-ups were great throughout.  The only concern was that she was going to be a large baby.  With me being 5'2" tall, and my husband being 6'3" (and almost a 12 lb pound baby!) I was a little concerned.  However, things progressed normally during labor.  I began pushing....which went on for TWO HOURS.  Still, no major concerns.  Then...when my baby girl is finally crowning (TMI?!), she gets stuck.  And I mean, stuck.  It's called a shoulder dystocia, where her shoulder was lodged under my pubic bone.  At this point, my baby is being seriously....smooshed shall we say?!  Her oxygen levels and heart rate plummet, and it's literally a life or death situation to get her out NOW!  One nurse was on top of my bed, pressing down above my pubic bone, while the midwife was rotating my baby's neck to get her to turn enough to get dislodged.  They did it! They got my baby girl out! I was overjoyed! However, I quickly realized my baby was not crying. I looked at her and saw how blue she was and they rushed her over to the incubator to start giving her oxygen with the ambu bag.  I was FREAKING.OUT.  I'm a former labor and delivery nurse, so I knew exactly what was going on, and I knew exactly what the consequences could be from lack of oxygen.  I felt a fear like never before.  I prayed out loud right then and there for God to help my baby girl...and I was not a spiritual person at the time.  God answered those prayers, because she began to pink up and cry! It was the most joyous sound I had ever heard! After the initial shock of it all, and knowing that my baby was okay, we noticed how she could not move her right arm.  It was flaccid and bruised.  Initially, the doctors thought it was a broken collar bone, which is common for that type of delivery trauma.  However, we later learned that it was something called Erb's Palsy.  She had suffered nerve damage to the bundle of nerves that controlled her right arm due to the rotation of her neck during delivery.  I was devastated and elated at the same time.  I was so thankful that she was seizures or brain damage from the time without oxygen, but I was so upset knowing that she had been injured, and no one could tell us if she would ever be able to use her arm again.  We were told she could have full recovery or none at all, depending on how bad the damage was.

After lots of tears, tests, doctors etc. it was determined that she had a stretch of the nerve, not a tear, which meant she would have some recovery.  We didn't know how much, and wouldn't for quite some time, because nerves regenerate at a very slow pace. To help keep her right side and left side developing properly, we began a strict regimen of physical and occupational therapy.  Starting at 4 weeks old (and it should have been sooner), we began therapy.  I wish we had known about the Hospital for Special Surgery during this time.  They are a world leader in orthopedics, rheumatology and rehabilitation. (Located in NY). Also, they have recently opened  CA Technologies Rehabilitation Center, at the Children's Pavilion providing comprehensive, individualized rehabilitation for both inpatients and outpatients from birth to 21 years.  Its multidisciplinary staff includes physical therapists, occupational therapists, and speech-language pathologists.  Don't get me wrong, we had a wonderful physical and occupational therapist. Our OT practically became part of the family and watched my daughter grow up from infancy to age 5! We still keep in touch.  However, my daughter's injury was not that common at the time, and my local pediatrician had basically no experience with Erb's Palsy.  No one could give me answers that as a parent, I desperately wanted and needed.  We looked into traveling out-of-state to find a specialist, but just didn't know if we should, would it help, were we doing all we could?  Many, many nights I lay awake thinking about if I should be doing something more, or something different. How could I make sure that my daughter had the very best outcome possible?

I got on the internet and researched everything I could find about my daughter's type of injury.  I learned that we were very, very fortunate.  My daughter was slowly regaining use of her arm, albeit limited, but she had mobility, whereas some children never have use of their affected limb.  I also learned that there were some options we had yet to explore.  I sought out a pediatric orthopedic surgeon when my daughter was about 3 years old.  He had a very aggressive surgery in mind.  I decided to get a second opinion after discussing it with my husband, pediatrician and OT.  The second surgeon was more in line with what I had read about as an option.  So, a few days after her 4th birthday, she had surgery.  A tendon transfer to help increase the range and mobility of her right arm. It was terrifying.  My first child, still practically a baby, and she was going to be put under anesthesia, have surgery, and then be in a upper body cast for several weeks.  Not just any cast either, a cast that would keep her right arm elevated!  However, I felt comfortable with the knowledge and experience of the surgeon, and we had the surgery.  It was so hard to leave my little girl in a operating room.  I was a wreck.  When they called us back into recovery, I was so scared.  However, I quickly realized my baby girl was a fighter! Literally.  She was 4 years old with one arm in a cast, and it still took 3 or 4 nurses to hold her down until we could get in there and calm her!  She was pitching a fit!  (We quickly learned that she and narcotics do not mix. At all.)
She didn't let it slow her down much! You can't see it, but there was a stick that ran from her arm to the cast around her waist. I can't tell you how many outfits I ruined by cutting them to fit that cast!

After the cast was finally removed, we started therapy again.  She had to 're-train' her arm & brain now that she had increased range of motion.  I tell you what...the first time my baby girl reached her arm behind her head without any assistance from the other hand, I was amazed and thrilled. (and relieved, having that reassurance that the surgery was the right thing to do!)  My 'baby' is now almost 12.  She can do anything she sets her mind to do.  Yes, her right arm is a little weaker than her left, and yes, I still have moments of panic, wondering if I have done all I can do, but she is my little miracle.  She is strong (mentally and physically) and amazing.

 My point to this very long post, and spilling my heart out is this....if anyone of you is going through something like this, or know someone that is, know that you are not alone.  I felt very isolated in the beginning, because I had never heard of or known anyone with Erb's Palsy and even my trusted pediatrician had very little experience with it.  It's a scary and lonely place to be. However, do your research; ask questions; if you don't like the answers, go ask questions somewhere else.  Do not be afraid to get 2nd opinions.  Seek out places that have the experience you need.  Yes, we had to travel out-of-town to get what my daughter needed, but it was so worth it. Check into places like Hospital for Special Surgery that have the experience and knowledge you need.  This is an excellent link with information.  Check out their video on YouTube to learn more as well.

I wrote this review while participating in a blog tour by Mom Central Consulting on behalf of Hospital for Special Surgery. A small donation to a charity of my choice was made in my name as a thank you for participating. You should consult with your physician or other health care provider before beginning any rehabilitation/therapy, sports training, or exercise program.


  1. Oh my gosh I had no idea!! And I can't even imagine what it was like going through that. You are BOTH fighters!

    HSS is truly an amazing place. it's where I've gone for both my stress fractures and my friend, who was hit by a car while biking and had a tibial plateau fracture repaired there last september has now done a triathlon, marathon, and competitive bike race less than a year post-surgery. they are truly miracle workers!!

    1. That's awesome Joanne! It definitely is worth it to go somewhere that has the experience.

  2. Oh my goodness! I would've been a wreck. It is the worst feeling as a parent to be completely helpless. But you truly rose to the occasion and fought for your baby girl. That is, I believe, one of our greatest responsibilities with children. We must be their advocates because they do not have a voice. Though it is off topic, I just had my baby girl evaluated for a speech delay. She qualifies for services and will begin therapy soon. I feel terribly responsible and an trying to figure out what I could or should've done that I didn't do. I guess that's the common thread here: parents trying to do the best for their children. :) I'm so happy your girl had a wonderful recovery!

    1. Good to hear from you, it's been a while! I know where you are at...I am meeting with my son's preschool teacher next week regarding his speech. I may have him evaluated as well. I've been worried about it for a while, and he has improved, but definitely not where my girls were at this age (he's 4). I have also wondered if I should have done things differently (less tv, worked with him more...hell, I don't know) We do the best we can. This parenting stuff is HARD!!



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