I’M A SURVIVOR…BUT I STILL STRUGGLEThe life of a high functioning

survivor of SBS and their family.

The Beginning

Macie was born premature at 35 weeks gestation

Macie was a small baby but deemed perfectly healthy

The Shaking Macie started home daycare in May 1999 On June 7th 1999 , after picking up Macie, the daycare provider stated she

cried all day and wouldn’t eat. On the morning of June 8th 1999 I brought Macie to the doctor about issues

the day before and she was sent home with a clean bill of health… 9:30am June 8th I brought Macie to daycare…advising the provider to call

me if there were any issues. 4:30 pm…Providers husband called me at work and stated “ The

Ambulance is on the way” then hung up 4:50 pm I arrived at the daycare to find my baby in the ambulance and was

handed the outfit cut off of her. Macie was unconscious and not breathing. I was not allowed in the ambulance.

At this point the provider tells me Macie had aspirated and was going to be just fine…she then drove me to the ER.

Upon walking into the ER all I hear are my baby’s screams…she was laying on a gurney with her eyes rolled in the back of her head and her little limbs jerking.

An initial CT scan was done and perceived to be “normal”….daycare provider left after that

The Hospital Stay

Macie is admitted to the hospital for more testing. Macie undergoes a spinal tap to test for Meningitis Macie continues to seize …sometimes for hours upon hours at

a time At this point the doctors diagnose Macie with Epilepsy…which I

do not agree with and insist on more tests. An Ophthalmologist was brought in and detected Bilateral

Retinal Hemorrhages Another CT scan was done…now showing a subdural

hematoma and swelling of the brain and also a skull fracture that was missed on the first CT scan.

We are now told Macie is a victim of SHAKEN BABY SYNDROME.

Macie remained in the hospital to recover for close to a month.

The Investigation After it was determined Macie had been abused everyone who had been

around her the prior 3 weeks was questioned. The Police and social workers flooded the hospital room with questions. The police questioned the daycare provider who came up with numerous

stories to explain Macie’s injuries. On day 5 inpatient the daycare provider called me and confessed to

shaking my baby. Her story was told like this: “ I was fighting with my husband and Macie

began to cry, so I picked her up and shook her until she went unconscious…then I got scared that I had hurt her and ran to the basement and dropped her on her head on the concrete floor”.

She then waited about an hour and called 911… Macie’s daycare provider was arrested and after 10 months in court took

a plea of Malicious Punishment of a child causing great bodily harm, and was sentenced to 48 months in prison.

She was ordered to pay me $255 in restitution for “missed wages” She was paroled on November 19th 2002 after serving 32 months in

Prison…she is now free to live her life.

Our Life goes on… Macie started out on June 8th 1999 being able to roll over and sit up, and drink out

of a Sippy cup. By 4:30 that afternoon she could no longer hold her head up, swallow and she was partially paralyzed.

Macie right away started with PT, and OT…she still continues to get OT PT and SLP 3 times a week.

She learned to roll at 11 months, sit at 12 months, pull to stand at 18 months, and she learned to walk by age 2.

Macie didn’t handle a lot of things typical children can handle…I could not vacuum with her home or run a blender and any loud noise startled her.

At age 3 Macie changed a lot…she became physically aggressive towards herself. She would punch herself in the face and ram her head into walls.

She was put on her first medication at age 3…an antipsychotic medication. We have tried most medications out there, and we still after 11 years can not find

one that works just right. Macie wears an AFO brace on her right leg and wears Bifocals Over the last 11 years, Macie has underwent 8 surgeries related to SBS…including

Removal of retinal hemorrhages Eye surgeries to correct cross eyes and lazy eye Bladder/Kidney surgery Heel Cord lengthening with her most recent being Dec. 09 which was her second heel cord legthening and

her foot was pretty much recreated.

After BoTox -------

Bladder/Kidney Surgery April 2006

Surgery #8 December 2009

Hidden Disabilities

Behavioral Challenges Physical Aggression

Macie throws objects when angry Verbal Aggression

Macie screams and has major meltdowns when angry and frustrated…this happens anywhere the anger occurs.

Impulsivity Macie is very impulsive in everything she does,

this includes writing on walls, breaking things, running out in the street without looking first…

More Hidden Disabilities

Academic Delays…Macie is in 6th grade with a full special needs schedule. She is learning at a 3rd grade level.

Social Delays…Macie has a very hard time making and keeping friends. In 11 yrs she has been invited to only a handful of birthday parties and has been to only 1 sleepover. Macie tends to stick around adults or children much younger.

Social Appropriateness…Macie is not shy…but she is not aware that talking to strangers is dangerous and she is willing to share anything about her life with perfect strangers…for example cashiers at the store get way more information from Macie then needed. Macie also doesn’t mind if her undergarments are showing or if her face is dirty.

Emotional Issues…Macie over reacts to most situations…laughing inappropriately, screaming at a slight touch, she is very oppositional and gets very verbally aggressive

Mom’s Struggles

SBS has effected me as a mother in numerous ways Extreme anger at times Nightmares Feelings of guilt Being over protective of my second child Becoming very overwhelmed by the behaviors Macie

exhibits

Sibling Struggles

In January 2009 Macie became a big sister. My son Kolsyn was born. Kolsyn struggles from the effects of SBS as well….

His safety is at risk when alone with Macie, they are not left alone for more then a couple minutes at a time.

Macie has picked him up and dropped him, she tries to hold him down, she gets very rough and aggressive with him.

Macie does however love her brother very much…she is just unable to control a lot of the impulses she has when it comes to Kolsyn.

SBS as a Positive

Since Macie has been 3 yrs old, we now go around to High Schools and Colleges and present her story and educate on Shaken Baby Syndrome…this has helped ease my pain a lot!

Kolsyn, our little advocate!