Sadie's Story
...and the beginning of the Sadie Rose Foundation
We were ecstatic and nervous at the same time when pink lines on the test confirmed our first pregnancy. I actually took four tests, all positive, before I could allow myself to believe it. We had only gotten married three months prior. After 12 nieces and nephews, on whom I doted on all the time, it was finally my turn.
We did all the things first-time expecting parents might do. I immediately joined pregnant mother’s message boards online, we talked about names, we did everything by the book. I started rummaging through the baby clothes in the department stores. We dreamed of whether the baby would be boy or girl and decided not to find out. We nicknamed the baby, Chickpea, and that’s how we referred to her for the remainder of the pregnancy.
We switched from my regular doctor to Dr. Botticelli, an OBGYN, who is also our personal friend. We knew that with him we were going to be in the best of hands for our pregnancies. Little did we know the journey we would take together.
Something wasn't right...
During our routine 20-week ultrasound, Dr. Botticelli was the one to tell us that Chickpea was not developing properly. He immediately scheduled an appointment for us at a Prenatal Diagnosis Center for further testing.
After hours on the ultrasound table, tests confirmed that our baby had a form of skeletal dysplasia, which in Sadie’s case included dwarfism. It wasn’t an easy or understandable diagnosis. There are about 175 kinds of skeletal dysplasia; about 30 percent of them are lethal. The bright side, we thought, was that 70 percent are not. At our last appointment before I delivered her, we were told it looked like we were going to have a healthy dwarf.
I went into labor at 26 weeks. Because of the build-up of fluid in my body I measured 38 weeks so my body thought it was time to deliver. My sister drove me to Rockingham Memorial Hospital where they immediately called in a medical helicopter and transported me to another medical center about an hour away.
Doctors and Prayers
I was on bed rest and in and out of labor from Friday until Wednesday. They tried everything medical science could offer to keep me from delivering because at this point we were still holding onto the hope that our baby was healthy. Every hour, every day, she could stay in the womb would give her more strength to survive on the outside.
Wednesday morning, June 20, 2007, 6:20 a.m., Sadie Rose Harlow arrived. We held her, loved her, prayed over her and believed that she was going to be okay. She was in the NICU in the care of some of the best doctors and nurses on the planet so they encouraged me to rest. If we had known that she was not going to make it, I would not have left her side.
Throughout the day we spent as much time as we could with her. We were back in my room for dinner when the doctors came and told us that Sadie was not going to survive. She died around 11 p.m. that night. Just short of seventeen hours, that’s all we had with her, and yet those are among the most precious 17 hours of our lives. Her specific diagnosis was hypochondrogensesis, a condition that no child has ever survived.
We were lost. Our arms were empty. They felt heavy. Life had dealt us a crushing blow. In that time of grief we knew we wanted to reach out to other families who experience the tragedy of the death of a child. Thus, the Sadie Rose Foundation was formed. We still miss her every day, but in reaching out to others, we are also keeping Sadie alive in our hearts and honoring her memory. She left us with empty arms and full hearts, our Sadie Rose.
Sadie's Poem
by Regina Cyzick Harlow - June 25, 2007
Friday
Pain, Fear, something is wrong
Hospital
Panic
Shots to stop the labor
A helicopter ride to UVA
Severe pain, Burning, Clenching, Writhing
A flood of Doctors and nurses
More meds to stop the labor
Finally it comes, relief
The pain subsides in the night
Morning, Exhaustion, Fear
What is happening?
What will happen?
Stabilized, monitors strapped to my body
Mild contractions
More pain, more fear
It’s happening again! More labor, more meds
The cycle continues
Labor, Days of labor!
Tuesday night, severe pain, Dilation
6:20 A.M. Wednesday, It’s time
Running,
Doctors running with me on the stretcher
No pain medication this time
Hard labor
Panting, breathing, panic, utter fear
My husband! Where’s my husband?!
They made him wait,
Sounds, my water breaking,
Warmth, tearing flesh
She’s coming, she’s breech
The pain, oh the pain!
My husband
Doctors helping Sadie
Stitches for me
It’s over, I did it!
Back to my room
Shower, a nice shower
The healing begins
Sadie's Condition
Grave, critical
Skeletal deformation
Small chest
Lungs, she cannot breathe
Tiny, so small and helpless
Strong, her heart was so strong
Prayers, so many prayers
Selfish prayers
God, make her live!
Love! To look at her
Love! To hold her, touch her, smell her
Helpless, oh so helpless
Life support, incubator
Doctors and nurses with grim faces
Scrubs, washed hands and arms
Holding her, holding on to her, not letting go
My tears falling on her tiny perfect face
Washing her with my tears
More prayers, more selfish prayers
Doctors, it’s time to hold her
Time to say good-bye
She has to go, she cannot stay
Still, her heart was strong
To the very end, her heart was so strong!
A Pastor’s blessing
Blue, she’s turning blue
Fading life, fading breath
It’s all fading, fading away
Holding, caressing, tears and pain,
Heartache
Monitors beeping
It’s time
Her final breath, her final heartbeat
Oh God it hurts. Will I live? Can I make it?
How do you tell your baby hello and goodbye within 17 hours?
Peace. She has peace. No pain, just peace.
Selfish prayers, selfish thinking,
I want her back, she can’t go!
I see her peace, but where is mine?
It comes, in time it comes
She would never have been comfortable in this world
She is comfortable now. She is in the arms of Jesus.
No pain, no suffering. She will bring me peace.
Sadie's Funeral
How do we plan for death when we were preparing for life?
Phone calls, endless phone calls
Have we taken care of this?
Have we talked about that?
More phone calls.
Family, friends and family
Cleaning, weeding flower beds, food
What do we want for Sadie’s service?
Simple, her life was so pure, so simple
Meetings, choosing a burial plot
Approving the casket
No burial plot, no casket, should ever be this small
Do we want extra plots next to her?
Shade, near another child, a small, simple grave
More pain, more extreme than the physical pain of her birth
Tears, pain, heartache
Sleepless nights, dreams of her final goodbye
Nervousness, fear, time for the service
A beautiful day! She had it ordered.
Sadie Rose was smiling on us. Blessing our tears
Her casket a small box, chairs, flowers
Graveside
People
Lots of people, almost 150 family members and friends
Crying, sobbing, smiling, remembering
Jesus loves me this I know
Time to move on
Our last good bye
Sadie Rose, our miracle, our Sadie Rose.
We would not go back. We would not change it.
This is how it was meant to be.
You have changed our lives forever.
We will never be the same.
Empty arms, full hearts
Our Sadie Rose
300 Club
We are looking for partners to help continue our momentum and are asking you to consider joining our $300 Club. We need immediate and ongoing funds to continue and are seeking individuals, businesses, churches, and organizations to commit to giving $300 a year or $25 a month. Our monthly operating expenses average $5000 with rent, facility, operations, programs, and payroll.