our journey kylee's story

7/29/2019 Our Journey Kylee's Story

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Our Journey through a Brachial Plexus Injury..so far

With a shocking discovery of my 4th pregnancy, I am bombarded with so many hormones and

emotions. I think back to my first pregnancy and we were so excited and nervous, but ready to

be parents.

And I regret not writing down how our journey began. So now (8 years, three kids, and one on

the way later) I will try and recollect as best I can Our Journey.

Throughout your entire pregnancy, you watch what you eat, what you are around, and basically

are careful with everything to make sure your baby is not harmed. I went through 9 months of

the first time mom-to-be with jitters, but knew everything would be okay because I was doing

everything possible to make sure my baby would be healthy and safe.

I had to be put on bed rest about 6 months along due to some spotting. I tested fine in the

beginning and did not have diabetes or any other problems and yet managed to gain over 75lbs. Starting off around 118 lbs., it was a little crazy to think the doctor kept saying there wasn't

anything wrong......but I would be ok if my baby girl was ok. The last month of my pregnancy, I

was in and out a couple times a week at either the doctors office or hospital for high blood

pressure. They would give me an IV, make me lay down, and send me right back home after it

dropped back to normal levels.....

The last two weeks, we would go straight to the hospital because my blood pressure was so

high. Still my doctor didn't agree I needed to be induced. Also we were not in agreement of my

due date, which I think was playing a big part on why he didn't want to induce, at first. I know it

can be off by a few days or so, but we knew he was way off. The due date he assigned made us

conceive on a certain date, July 14, 2004, and I knew it wasn't possible. We buried my

grandmother that day. Not only that, but we didn't have any sexual activity that entire week

due to dealing with the death in the family. So I tried explaining it to him and he kept insisting

we were wrong. You see I kept spotting but would miss a real period, but tests came back

negative. Finally one came back! By then, I was actually almost 4 months pregnant! My original

due date was March 20, 2005, but after the first ultrasound changed to April 11, 2005.

So the last week of my pregnancy, (according to the doctor 39 weeks and to us 41 weeks) I was

miserable. We went to the hospital 3 times. On that Friday we went to his office and myhusband said enough is enough. She needs to be induced and now before something happens

to her or the baby. The doctor had plans that weekend, we learned later, and wanted to induce

on the Monday. Guess what happened?

Yep, my water broke Sunday morning around 2am.


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We went to the hospital around 9 am.

My labor progressed very slowly.

I got an epidural around 5 cm.

I finally started pushing late that evening around 6pm. That happened for a little over 3 hours.

In that time, a nurse actually strattled my stomach on the bed and started doing what looked

like CPR on my stomach. My babys shoulders got stuck, this is known as shoulder dystocia.

Once they were out, her head got stuck also.

The on call doctor, my doctor's partner who knew nothing about my background or pregnancy,

gave me an episiotomy. And still had to use forceps.

I still ended up with a fourth degree tear.

And finally it was over at 10:41 pm. Kylee Elizabeth Gautreau, 8lbs. 2oz. and 19.5 inches long,

was born.

We weren't told something went wrong. We weren't told her right arm was completely

paralyzed. All we were told was her weight, she looked ok, and she was scored at 41 weeks

gestational age. (Of course I laughed and said I knew we were right!) Then they handed her all

wrapped up in a blanket. After oohing and awing, I finally unwrapped her to check the toes and

fingers, of course you check to make sure they are all there.....

I instantly knew something was wrong. Her arm was limp and not moving.


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Being first time parents, we didnt know what to expect. I guess in the back of my mind I knew

my labor and delivery wasnt normal. But after watching all the shows on t.v. , you figure they

probably only show the really easy ones and it usually doesnt happen thatway in real life. So

when her arm would not move, so many things went rushing through my mind. What did I do,

what happened, how could this happen, I dont understand?

The on call pediatrician diagnosed her the following day with Erb's Palsy, a Brachial Plexus

Injury. All we were told is it should get better over the following months to a year.

My doctor never came to check on us. The delivering doctor never came back to our room

after the delivery. In fact, at my 6 week checkup, my doctor came in asked a few questions like

how are you feeling and how is everything going. Like nothing went wrong. I didnt complain

about how bad it hurt to sit, pee, or think about why. I just said fine, but we have some

questions about Kylee and her arm. We just arent sure how this happened. He said I think this

conversation is over and left. He never even checked me, my stitches, or my tear. Right then

we knew it was time to see a lawyer because something was wrong. Being honest with us, he

said you may have a case, but it will be a really long road, and may cost a lot. He also said its

been done before and doctors are really hard to go up against. We decided that with the cost of

her therapy and doctor bills it wasnt something we would be able to do. If I could have looked

ahead and seen the amount of heartache, the amount of tears shed, the frustration, the

surgery we probably should have gone through with it. Although going through with it would

not have cured her or fixed our situation. Our Journeys path was set. But it may have helped

with the costs. Unfortunately, with these injuries there is a time limit on bringing a case against

someone. Plain ridiculous! These children are injured for life. Their whole world and the

familys is altered because of something that is preventable. Not to mention the problems

with insurance companies saying they cannot cover certain costs of things. I am in the process

of working on how to change these things in the state of Louisiana.


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The minute I got home from the hospital I started researching and did not like what I found.

Some facts about a Brachial Plexus Injury (BPI):

Brachial plexus injuries are injuries affecting the network of nerves that control themuscles of the shoulder, arm, elbow, wrist, hand and fingers. Brachial plexus injuries canresult in full to partial paralysis of one or both (bilateral) arms.

Stretching, tearing or other trauma can cause injury to the nerves of the brachial plexus Brachial plexus injuries often occur during the birthing process. Availability of brachial

plexus statistics vary widely, but where figures are available the general consensus is

that brachial plexus injuries occur in 2-5 out of 1000 births.

More children suffer from brachial plexus injuries sustained at birth than DownSyndrome or Muscular Dystrophyyet information on this disability is not so readily

obtained.

Many families and individuals with brachial plexus injuries face ongoing struggles withinsurance companies to obtain coverage for treatment related to their disability. Most

insurance companies are unaware or do not understand the treatment protocol for

brachial plexus injuries.

This injury is a preventable injury.Some identifiable risk factors for shoulder dystocia ( I had 7 of these warnings plus I guarantee I

had gestational diabetes):

Suspected large baby - over 8 lbs.

Maternal diabetes / gestational diabetes (fetal assymetry) Maternal obesity An overdue baby - over 40 weeks Short maternal stature Contracted or flat (platypelloid) pelvis Maternal weight gain -more than 35 lbs. Protracted first stage of labor Prolonged second stage of labor

Risk Factors for Shoulder Dystocia That May Be Associated with Prior Pregnancies ( because of

my first delivery, I switched doctors no doubt and have had

to deliver by c-section for all other pregnancies):

A history of shoulder dystocia during a previous delivery


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A history of giving birth to large babies Eight years or more since your last birth

Other Factors That May Be Associated with an Increased Risk for Shoulder Dystocia:

Epidural: Because of loss of sensation from an epidural, the mother may not be able tofeel the 'pushing' sensation and the baby might descend in a slightly awkward position.

Tools: The use of tools (for example, forceps or vacuum) to help the baby descend maypossibly increase the risk of shoulder dystocia as well.

Labor Induction: There appears to be a possible association between an increased riskfor shoulder dystocia and the use of labor-inducing drugs.

Risk Factors For Brachial Plexus Injury (without the occurrence of shoulder dystocia):

Uterine tumors Tumors in the neck of the baby Viral disease Other abnormalities Breech fetal position at time of birth

I was devastated. For 9 months, I carried this little baby in my stomach and took the

precautions to prevent anything from going wrong. Only to have the day of delivery go so

wrong.....

You ask the question why over and over. I got no answer as to why us.

So I came up with the idea that God has special plans.

A special Journey for Kylee and our family.


6/12

Here is what I had to record in Kylees baby book, besides the normal firsts..

At a week old, Kylee started therapy

2 weeks old, she regained finger movement

2 months old, she was still working hard but having fun

3 months old, she regained wrist and elbow movement


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4 months old, she started rolling and rolled everywhere she wanted to go, even down

the hall to her room

Around 7 months, she finally started using two hands to hold bottles

9 months old, I switched therapists because I felt like I was doing all the work andgetting no help. They would only see her once a month for about 15 minutes, I knew it

wasn't enough

We started 3 times a week with the new therapist! It was amazing how much more shewould progress


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10 months old, she finally perfected sitting alone without falling over

She never really crawled, but did this sort of monkey scoot!

14-15 months, she finally perfected walking and then went straight into running.

I graduated in kinesiology with a minor in exercise science, so I felt comfortable in

understanding all the research I was finding. I realized with her injury, the simple things she

would have trouble with in life. Fixing her hair, getting dressed, putting on a bra when she got

older, activities, sports, day to day things we take for granted, and so on.

I continued to do research, trying to find someone out there that could help!

After two years, I finally found someone. At age 2, Kylee saw a doctor in New Orleans, LA that

said she regained all function possible and was going to remain the same stage for the rest of

her life. This was only at about 40% usage of her arm. I would not take that for an answer. So I

continued to research. Later that year I found a Doctor in Houston, TX that specialized in


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Brachial Plexus Injuries and also did surgeries that help in aiding with recovery. So after sending

them videos and talking via phone and email, I knew the next phase of our lives would consist

of our baby girl having at least one, possibly two surgeries. Over the following year, I struggled

with the insurance company on getting the doctor in network and other problems. I basically

had to prove that this surgery was not cosmetic and would help my child improve her quality oflife. After a full year of struggles, we finally had a date set for surgery! August 27, 2009!

Kylee had the Mod-quad procedure done at age 4. This consisted of:

latissimus dorsi muscle transfer for external rotation and abduction teres major muscle transfer for scapular stabilization subscapularis muscle release axillary nerve decompression and neurolysis). Depending on the individual child, other

nerve decompressions or muscle/ tendon transfers (such as pectoralis muscle releases)

might be performed at the same time

Her scapula had such a huge winging effect that the doctor had to also shave the tipdown quite a bit

Its been a long recovery and slow progression.


10/12

Because of this surgery, she has gained about 90% usage of her arm!

4 years later she is a thriving 8 year old. Kylee continues to amaze me with each passing day.

She has surpassed everything the doctors said she would never be able to do plus more! She is

head-strong and will not back down on a bet and will try anything! Especially if it means using

"rightie" because she is told it would be hard or bet she can't do it!


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You see, we raised her in believing she was not born with a disability, but that God made her

special to help spread awareness. And that the word can't is not a part of our dictionary!

Life is still a day to day struggle. She still sees her same therapist once a month, so we can make

she sure she is staying on track. I do the rest with her. We have to do serial casting on her

elbow every 6 months. The contracture in her elbow is one of the many secondary issues that

can happen with her injury.

She deals with a partial shoulder dislocation from time to time also, but has never complainedof pain.

Her scapula still has a winging effect, and I constantly worry she'll get hurt there and mess up all

the progress she has made thruough her struggles and triumphs.

As she gets older, it's a little harder to do "therapy" so I have to make up games or make her do

"chores" so that she doesn't realize is an actual exercise for her arm. I've learned to be sneaky

about it! And yet, since she was about 5, she randomly comes up to me and says look mom I

made up a new exercise for "rightie!"

So far, she's been lucky and every checkup we are told no more surgeries as of now. But this

doesn't mean everything is fixed and her battle is over....it's still only the beginning, she is only

8 and has her whole life ahead....


12/12

Every year, Brachial Plexus is given an awareness week in October. This year it will be October

20-26, 2013. I am currently working on awareness shirts with another mother I have become

friends with. I want to spread awareness of this injury so every mother and father is aware of

what unfortunate events could happen to their child. I had never heard of this injury before

Kylee was born. And most people who ask whats wrong with her arm never have either.

I think it is time for this preventable injury to be known.

our journey kylee's story

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