A Story of Regret
Early in November of 2003 we had found out that we were 10 weeks pregnant....WHAT A WONDERFUL SURPRISE. We had an ultrasound done and at that time everything "looked" to be ok. About 1 month later I started having severe pains and we went to the emergency room at 7 pm on the evening. We did not return home until 4 am the next morning. While in the ER we had an ultrasound done. The tech found a 2 blood vessel umbilical cord and massive cysts on his tiny kidneys. At that point they said don't worry to much just set up an appointment with a perinatologist and schedule another ultrasound.
We decided to do it after Christmas because we had a 2-year-old daughter and we wanted to make her holidays happy. Well the morning of December 26, 2003 rolled around; we got in the car and went to the hospital, which was about an hour away from our home. We sat in the waiting room for about an hour waiting, as the family before us had some troubles also. We finally got in their and we had a talk with Kate, the genetics counselor. She explained that as young as we were it was VERY unlikely that anything serious could be wrong. We talked to her about 30 minutes before we went in to the ultrasound room.
I was scared but little did I know my world would soon come crashing down. When the tech started she looked at his umbilical cord, which had 2 blood vessels instead of 3, then she looked at his tiny kidneys, which we knew there were already problems there, massive cysts that pretty much covered the entire kidney. Then she looked at his heart "white spots" they called it otherwise known as heart defects. She then looked at his spin and his hands she didn't say much at all. Then she went to his tiny beautiful face......distorted I could see that plain as day. Our baby boy had a cleft lip and palate. I was devastated at that point I LOST IT! All I could do was cry; I knew this baby had no chance at a "normal" life.
We went back to Kate's office and she explained what she thought it could be and told us what everyone has heard "incompatible with life". She told us he would live no longer than two days. We had some difficult decisions to make.
We had chosen to have a termination due to all the pressure from the doctors/genetic counselors/professionals. Also at that time it was all we knew to do. No one gave us any information and we had no access to viable information. WAS GOD PUNISHING US I HAD WONDERED?????
We had planned the D & E for January 4 2004. So on January 2 we went in to have the first sent of Laminara inserted. The next day a huge ice storm hit. We had to wait 10 long miserable days to get back to the clinic (LOVEJOY SURGI CENTER). When we went back we had to start the laminara process al over again. It was completely miserable, I had contractions.........small ones they felt like Braxton Hicks. Then that terrifying morning came January 16, 2004. We went to the clinic at 6 AM, by 6:30 the procedure was over. My baby was gone, we never saw him, we never kissed, we never hugged him. Sometimes I wonder if I had taken the pregnancy to term (or as far as my son would make it), if he would have had a chance at life like some of these children.
Maybe if the professionals we had talked to would have given us more information we would have made a different choice. To this day, I still live with the pain of the choices we made. Trisomy needs to have a bigger voice and all the professionals need to be more open minded and not so much on terminating, after all do they really know the after pains we go through? NO!
We had an autopsy done on his tiny body...his tissues and cells showed the rare chromosomal disorder "Trisomy 13, Robertsonian Translocation". This society is so cruel, people do not except the ones who do not turn out to be what people would call "normal".
Below is a poem that I love by Kaye DesOrmeaux that I would like to share with you.
My mom is a survivor
Or so I've heard it said.
But I hear her crying at night
when all others are in bed.
I watch her lie awake at
night and go and hold her hand.
She doesn't know I am with her
To help her understand.
But like the sands on the beach
that never wash away.
I watch over my surviving mom
who thinks of me each day.
She wears a smile for others
a smile of disguise.
But through Heaven's door
I see tears flowing from her eyes.
My Mom tries to cope with death
to keep my memory alive.
But anyone who knows her
knows it is her way to survive.
As I watch over my surviving mom
Through Heaven's open door.
I try to tell her
that angels protect me forevermore.
I know that doesn't help her
or ease the burden she bears.
So, if you get a chance, go visit her.
And show her that you care.
For no matter what she says
no matter what she feels.
My surviving Mom has a broken heart
that time won't ever heal.
Here are some other inspirational quotes I would like to share:
When someone comes into
And they are to quickly gone,
They leave footprints on our hearts.
And their memory stays with us forever
Before the first stars blazed in your sky,
Before the sun ever kissed you,
Before you cried your first cry.
WE LOVED YOU.
-An excerpt from the book "Love Song For A Baby"
Author Marion Dane
Sometimes the heart sees what is invisible to the eye.
In loving memory of AUSTIN REED.
We love you sweet baby and we always will.
Some day we will see you.
Until then fly above and watch over us.
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-The support, information and encouragement provided by the PPFL parents is not meant to take the place of medical advice by a medical professional. Any specific questions about care should be directed to a health care professional familiar with the situation.