 Her legacy |
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What makes a Mother
I thought of you and closed my eyes
And prayed to God today.
I asked what makes a mother
And I know I heard Him say...
“A mother has a baby.
This we know is true.
But can you be a mother
when your baby`s not with you?
“Yes, you can,” He said
with confidence in His voice.
“I give many women babies.
When they leave is not their choice.
Some I send for a lifetime
And others for a day.
Some I send to feel your womb
But there`s no need to stay.”
I just don`t understand this, God.
I want my baby here.
He took a breath and cleared His throat
And then I saw a tear.
“I wish that I could show you
what your child is doing today.
If you could see your child smile
With other children and say,
“We go to earth to learn our lessons
of love and life and fear.
My Mommy loved me oh so much
I got to come straight here.
I feel so lucky to have a Mom
Who had so much love for me.
I learned my lesson very quickly.
My Mommy set me free.
I miss my Mommy oh so much
But I visit her each day.
When she goes to sleep,
On her pillow is where I lay
I stroke her hair and kiss her cheek
And whisper in her ear,
“Mommy, don`t be sad today.
I’m your baby and I’m here”
So, you see, my dear sweet one,
Your child is okay.
Your baby is here in my home
And this is where she`ll stay.
She`ll wait for you with me
Until your lesson is through.
And on the day you come home,
She`ll be at the gate waiting there for you
So, now you see what makes a mother.
It`s the feeling in your heart.
It`s the love you had so much of
Right from the very start.
Though some on earth may not see
You`re a mother with a daughter.
They`ll be up here with me one day
And know you`re the best Mother.”
(Author unknown...)
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Sudden Unexplained Death in Childhood (SUDC)
What is SUDC?
SUDC is a rare cousin of SIDS that affects children after their first birthday. Sudden Unexplained Death in Childhood (SUDC) occurs in children over the age of twelve months. The cause of death remains unexplained after thorough case investigation including: examination of the death scene, performance of a complete autopsy, and a review of the childs and familys medical history. SUDC is a diagnosis of exclusion given when all known and possible causes of death have been ruled out.
We have never heard of SUDC. Is this something new?
SUDC is not a new phenomenon, however, it has received very little attention in the medical literature. Little is known about its cause or causes. It is far less common than Sudden Infant Death Syndrome (SIDS). According to 1998 Centers for Disease Control (CDC) data, the incidence of deaths attributable to unknown or unspecified causes in children ages 1 to 4 years is 1.16 deaths per 100,000 children. This compares to an incidence of 0.7 deaths per 1,000 live births for SIDS.
What causes SUDC?
By definition, the cause(s) of death in these children is unknown. The diagnosis can be made only after thorough review of the medical history of the child and its family, evaluation of the scene where the child was found lifeless, and postmortem examination. This must include microscopic examination of the tissues, toxicology and metabolic analyses. Comprehensive postmortem evaluation may allow identification of known causes of sudden unexpected death in childhood, in which case a diagnosis of SUDC is not made.
Can SUDC be predicted?
No. At the present time, SUDC cannot be predicted. Since these children appear to be healthy, there is no obvious reason to have any testing done. And, health care providers would not know what, if any testing would be appropriate.
Can SUDC be prevented?
At the present time, there is no way to prevent SUDC as its cause(s) is not knwon. It is hoped that future research will identify means by which SUDC can be prevented. If and when risk factors are identified, such as prone sleep position for SIDS, then one might anticipate reduction in the risk of SUDC. In the meantime,follow optimal pediatric care recommendations, including attending well child visits, maintaining current vaccinations, and obtaining appropriate health care when clinically indicated.
Is SUDC inherited?
This is a difficult, if not impossible question to answer at this time. There is so little known and published about the sudden death of children beyond one year of age. The current medical literature seems to indicate that in the majority of cases there may not be an increased risk of the subsequent child dying. But much research needs to be done to establish the true risk for subsequent siblings.
There are inherited or genetic disorders that can cause sudden death; this is one of the reasons that comprehensive postmortem examination is very important. By identifying the disorders, appropriate pregnancy counseling and medical management of subsequently born children can be undertaken.
Are there state or national guidelines for investigating sudden unexpected deaths of children?
Death investigations vary widely throughout the United States and abroad. Virtually all states in the United States mandate autopsy examination in cases of sudden death in infancy. Although cases of SUDC would legally fall under the jurisdiction of the medical examiner or coroner, autopsy examination may not be performed in some jurisdictions. This is especially true if the attending physician is willing to sign a death certificate. The postmortem evaluation of a case of SUDC may not be as comprehensive or systematic as in cases of sudden unexplained death in infancy. For example, even though an autopsy is performed, important ancillary studies, such as metabolic analysis, may have been omitted.
Standardized protocols for both death scene investigation and postmortem examination in sudden unexplained infant death that have been endorsed by the National Association of Medical Examiners (NAME) and the Society for Pediatric Pathology. However, there are no mandated protocols for cases of sudden death after the first birthday. The existent protocols for infants could serve as an important, but imperfect diagnostic aid for children over one.
How does an SUDC child affect the family?
The family and caregivers of SUDC children are devastated by their loss and the sudden and unexpected nature in which it occurred. At one moment, a family has a happy and healthy child and soon after, without warning, the child is found dead. Even after a thorough investigation, medical professionals cannot explain to the family why their child did not wake up that particular day. This lack of understanding complicates their grief.
Families are further burdened with the commonly held belief that once a child reaches their first birthday, that sudden and unexplained deaths cannot and do not occur. Limited awareness and understanding of SUDC exists among both the scientific and bereavement support communities. Families often grieve in isolation, without information, resources or knowing that other families exist with their similar loss. Until now, there has not been a centralized entity that has addressed the many issues specific to SUDC tragedies.
Contact with other SUDC families can help. The newly bereaved can find understanding, hope, insight and objectivity through peer support of those who have had a similar loss.
For more information on SUDC and
SIDS please visit the following sites:
http://SUDC.org
http://sidsfamilies.com
http://sidsalliance.com
To donate in Memory of Kylie to
find a Reason for SUDC please visit http://www.active.com/donations/fundraise_public.cfm?key=KylieAnnGinn
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FOR KYLIE
AS A MOTHER AND A GRANDMOTHER, ALL MY BABIES ARE PRECIOUS TO ME. I LIVE FOR MY FAMILY. KYLIE IS EXTRA SPECIAL TO MY HEART. SHE IS A HAPPY GENTLE, LOVING AND LOVABLE BABY AND SO SMART.
SHE GIVES KISSES, SHARED HER SIPPY CUP AND FOOD WITH YOU, SHARED HER JOY OF HER TOYS AND ANYTHING NEW TO SHOW YOU, HER EXPRESSIONS ALONE JUST MAKES YOU SMILE AND WARM YOU ALL OVER. IT’S THAT INNOCENT LOOK, LOOK OF WONDER AND LAUGHTER.
ANDREA IS A GOOD MOTHER, SO DEVOTED AND ATTENTIVE, CAUTIOUS AND TEACHING HER NEW THINGS, KYLIE WOULD CRY IF ANDREA LEFT THE ROOM.
WARREN AND ANDREA TRIED TO PUT HER IN HER OWN CRIB AT 4 MONTHS BUT THEY JUST COULDN’T LET THE BABY OUT OF THEIR SIGHT.ANDREA WOULD SLEEP ON THE FLOOR BY HER CRIB. EVENTUALLY IN A MATTER OF HOURS, WARREN TOLD ANDREA TO LET HER COME IN THEIR BED. SO EXCEPT FOR SOME NAP TIMES, SHE WOULD SLEEP IN HER OWN CRIB. MANY TIMES I WOULD COME OVER AND KYLIE IS TAKING A NAP WITH ANDREA IN THE BIG BED.
FOR WARREN, MY SON, KYLIE WAS HIS PRIDE AND JOY OF HIS LIFE. HE WOULD COME FROM WORK AND SHE WOULD RUN TO HIM. DA DA , AND HE WOULD PICK HER UP AND THEY HAD THEIR PRIVATE ROUTINE OF LOVE AND SHARING OF POINTING TO OBJECTS AND SHE JUST LOVED TAKING OFF HIS HAT, PUT IT ON HER LITTLE HEAD AND PUT IT BACK OF HIS HEAD AND LAUGH.
SHE JUST LOVED COMMERCIALS, SESAME STREET, NICKELODEON, AND MUSIC. SHE HAD A KITCHEN SET AND SO MAY TOYS, EDUCATIONAL ONES, FUN ONES, CREATIVE TOYS, BUT THE BEST ONE IS THE ONE WARREN MADE OUT OF A BIG CARD BOARD BOX. IT HAD A ROOF, WINDOWS AND A DOOR. THEY PLAYED PEEK A BOO.
WE ALL HAVE LOST A HUGE PART OF OUR HEARTS. ALL BABIES ARE LOVED BUT OUR KYLIE WAS ESPECIALLY LOVED BY OUR FAMILY AND SPECIAL FRIENDS, MARK AND BARBARA.
IN HER MUCH TOO SHORT LIFE SHE HAS TAUGHT US THE MEANING OF UNCONDITIONAL LOVE, OPENING UP OUR INNOCENCE AGAIN AND SEE A HAPPY WAY OF LOVING LIFE.
THE GRIEF AND SORROW BY ALL THAT KNEW HER WILL NEVER LEAVE US BUT OUR WONDERFUL MEMORIES OF HER AND HER INNOCENT SOUL WILL LIVE WITHIN US FOREVER.
LOVE,
GRANDMA JUDY
MAY 13, 2005
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The Shopping Trip
By Linda Vicory
As I peruse the aisles,
of the local store,
I see things more differently,
than I ever have before.
"Daddy's Little Angel",
the embroidered bibs do read.
But, Daddy's angel is in Heaven,
and bibs she does not need.
She does not need a bottle,
a dress or a toy.
Of buying those things for her,
we shall never know the joy.
There are tiny jars of baby food,
that she will never eat,
And shiny shoes with buckles,
that will never touch her feet.
As the bikes and trikes taunt me,
from high up on the rack,
Tears will break free from my eyes,
if I dare look back.
I run off to the restroom,
to blow my nose and cry.
I wipe my eyes, swallow hard,
and let out a sigh.
I must go face the paper,
college and wide rule,
That my little angel,
Will never use in school.
I hurry past the greeting cards,
that the people choose with care,
And I am reminded,
of the holidays we shall not share.
In the checkout line I bow my head,
and heavy is my heart,
For the family right in front of me,
has a newborn in their cart.
Shopping in the local store
used to be mundane.
Now every aisle's full of items,
which remind me of my pain.
So, quick as I can, I give the cashier,
the money from my purse,
And hurry away from those who don't know my pain,
in this foreignly happy universe.
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