April 2014 - Guild for Infant Survival of Orange County

REFLECTIONS
SPRING ISSUE
VOLUME 98
President
Colleen Ma
Vice President
Penny Stastny
Treasurer
Evelyn Clemente
Recording Secretary
Liz Willett
Historian
Carole Guttilla
Parent Contacts
 Jordy Jahn
(714) 501-6346
 Colleen Ma
(714) 315-4605
Spanish Speaking
Contact
 Liz Ramirez
(562) 233-7864
Grandparent Contact
Carole Guttilla
(714)524-7647
Medical Advisors
 Thomas G. Keens, MD
Professor of Pediatrics
University of Southern
California School of
Medicine/Children’s Hospital,
Los Angeles
 Henry Krous, MD, Retired
Vice-Chair Director of
Pathology Children’s
Hospital,
San Diego
Technical Consultant
Andrew Beale
Unisys Corporation
Executive Director
Barbara Estep
APRIL 2014
A Note from the President
Love is in the air in my household. My son gets married in three
weeks and the days and minutes are flying by at breakneck
speed. This is my second child to get married and we are just as excited the second time around. I realize with each family event someone is missing, our Stephen. He has been gone for many years now,
but there is still a hole in our family, he is still missed, especially at
significant family occasions. I was touched when the groom said, „So,
Mom, what are we doing to remember Stephen at the wedding?‟ The
memory will be quiet, in a tender moment when our family gathers
before the ceremony to pray for our son and his bride, we will
remember. There is a hole in your family that causes so many emotions, ranging from beautiful to painful. I encourage you to find safe
and healthy ways to deal with these emotions. You can talk with a
friend, attend a peer support meeting, volunteer with your favorite
charity, write about your experiences with grief, talk to your spouse,
write a letter to your child, help another grieving family, meet with a
therapist, visit your child‟s gravesite, or seek spiritual support.
Our wedding will not happen without the support of friends, family,
and professionals; I cannot do it all on my own. It is not easy to ask
for help, but I must, because in the end that will be best for everyone.
Please, dear friend, do not walk this journey of grief alone. The
GISOC is here to support you. We are only a phone call or e-mail
away. We would be honored to help you and your family.
Colleen Ma, President, GISOC
Inside This Issue:
Changes at the Guild
2
Donation Made by GISOC to CHLA
3
Autonomic Nervous System Dysfunction and SIDS
4
Graco Recall
9
Calendar
10
Donations
11
VOLUME 98
Page 2
S P R I N G is s u e
Can I Still Grieve?
How much time am I allowed,
are there rules I must go by?
Does anyone ever keep track
of the thousand tears I cry?
Will I someday know the answers,
have it figured in my head?
Just how long am I supposed to
grieve now that my child is dead?
People think they know the answers
to all the questions I may ask.
But only if you’ve lost a child
can you understand the task.
CHANGES AT THE GUILD
In order to continue to serve the readers of our newsletter,
Reflections, and still make prudent financial decisions, we
are reducing our hard copy publications to twice per year in
April and October. We are increasing our e-publications to
four times per year in January, April, July and October. If
you would like to receive your newsletter by e-mail, please
contact Lisa Popper at [email protected] or (714) 9609897.
Cell phones have certainly changed the way many of us
make calls today. Some of us have even dropped the land
line in our homes and gone strictly to cell phones since long
distance charges are zero or minimal. Taking these changes
into consideration, the Guild will no longer be offering an
800 number. This decision was based on very limited use of
the 800 line and the expense involved. The majority of calls
we receive come directly to the office (714) 973-8417. The
Guild believes that dropping the 800 number will save us
money without affecting our service to parents and families
affected by the death of a child.
I’m reading all the books I can,
to know what grief’s about
But do these rules apply to all?
It’s hard to figure out.
While driving home from work tonight,
Your gift to honor
a loved one is appreciated.
Send your tax deductible donation to:
Guild for Infant Survival, Orange County
I feel I’m sinking low.
I try to put grief off my mind
but where can I now go?
You think grief has a pattern,
P.O. Box 148
Tustin, CA 92781
with a beginning and an end.
Love reigns over
But I’m grieving for a lifetime,
all, including
can you understand, my friend?
So, when I really need you,
will you stay or will you leave?
What will be your answer,
when I ask, “Can I still grieve?”
Debbie Hefflinger
money, power,
disease and death;
Love lives after
all things die.
Scottie Somers
Newsletter
Deadline
If you would like to contribute
an article or poem to an
upcoming issue of Reflections,
please contact: Lisa Popper at
(714) 960-9897 or email her at
[email protected].
The
next newsletter deadline is
6/1/14. We encourage your
participation!
VOLUME 98
Page 3
S P R I N G is s u e
Donation made by GISOC to the Children’s
Hospital Los Angeles (CHLA) !
CHLA5-East Wing –The CHLA 5-East safe sleep
initiative team has been hard at work for over a year
to develop a “Safe Sleep Policy” for their 5 – East
Wing. The plan is to then extend the policy to the
entire CHLA. As part of the policy all wings of
CHLA will be required to show the “Safe to Sleep”
10 minute video produced by the National Institute
of Child Health and Human Development
(NICHD). This free video is now available in both
English and Spanish along with pamphlets and
posters that may be ordered through the website
http://www.nichd.nih.gov/SIDS.
Our California SIDS Program and the California
Department of Health are great promoters of this
video. In my opinion this is the best Safe Sleep or
Back to Sleep video that has been produced
nationally.
This video can be viewed through the hospital’s
education TV network called “GET WELL NETWORK” and the hospital policy for this has already
been accepted and the video is now a requirement
for any baby (parents) that is admitted to CHLA
and is under 1 year of age.’
The one exception to this rule has been the Neonatal Intensive Care Unit (NICU) that does not have
the GET WELL NETWORK in their unit.
Because we obviously have a great need for NICU
parents to view this safe sleep video (premature
babies are a higher risk of dying from SIDS) we
asked our GISOC if they would consider donating
monies to purchase at least 2 TVs with DVD
capacity (and cart) to CHLA so that the NICU
parents would have the opportunity to watch the
NICHD Safe Sleep video. On November 18th’ the
GISOC Board met and voted to give $2,000 to
purchase the equipment needed (2 TVs with DVD
capability and carts) to make the availability of this
video possible to all NICU parents at CHLA. At
this time the TVs are being purchased and will be
ready to use very soon. THANK YOU GISOC FOR
YOUR GENEROUS DONATION TO SUCH A
WORTHY CAUSE!! Dr. Thomas Keens and
Penny Stastny (nursing consultant) are a part of
this important team which meets monthly.
How to Help a Friend Who Is Grieving
Grief, Loss, and Friendship
By Cherie Burbach
When your friend is hurting, it is the worst
feeling in the world. You want to help, say the
right things, and take away your friend's pain.
But sometimes the way you act can make things
worse, even when your intentions are good.
What to Say to a Grieving Friend
Your first impulse might be to say, "If there is
anything I can do, please let me know." Since
your friend is hurting, you don't want to add to
her burden, and if she needs to call you up and
ask for your help, it might just feel like one
more thing she has to take on. Instead, offer
suggestions on what you can do.
Some things to offer are:
 Cleaning house
 Making meals
 Picking up the kids from school
 Helping with childcare
 Running errands
 Picking up books, CDs, or movies to cheer
your friend up
 Random acts of kindness that lift their spirits
All of these options depend on what your friend
is going through and what type of things will
ease her burden. By offering a few of these
ideas up, it may allow your friend to think of a
way you could help.
Listen
When your friend is working through grief, the
natural tendency is to tell her about how it will
all get better one day.
But before you start
doling out advice or
even anecdotes about
how you recovered from
grief, stop and just
listen to your friend.
Continued on Page 5
S P R I N G is s u e
VOLUME 98
Some Ways to Help
a Grieving Spouse
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Assign top priority to your
marriage relationship.
Cultivate transparency, openness, and honesty.
Accept the pain that you feel.
Be willing to share it and to listen to your
spouse’s expression of the pain he or she
is feeling.
Be patient with your spouse and with
yourself. Recognize that your spouse is
probably not at the same place in the
grief process as you, and that is okay.
Don’t expect your spouse to be your only
source of healing.
Keep working at communication. Give
special attention to your affection for
each other. Learn and practice gestures
of love. Remember to stay in touch
physically; the importance of human
touching and hugging is hard to overestimate.
Allow or create space in your relationship. Everyone is entitled to a degree of
privacy with their feelings, including their
grief.
Allow yourselves to enjoy life and each
other. Be willing to laugh together, as
well as to cry together. Work at finding
some fun things to do together.
Help each other to remember that life is
more than this child who has died. As
important as this child is to you, and as
much as you feel pain over his or her
death, your marriage relationship involves far more than this child.
Howard Cupp, Norman, OK
I believe that imagination is stronger than
knowledge—
myth is more potent than history—
dreams are more powerful than facts—
hope always triumphs over experience—
laughter is the cure for grief—
love is stronger than death.
~Robert Fulghum
Page 4
Autonomic Nervous System
Dysfunction and SIDS
SIDS is not as simple as babies stopping
breathing during sleep. Research by Professor
Hannah Kinney and her colleagues at Harvard
suggests significant abnormalities in brainstem
serotonin in babies who died from SIDS compared
to controls. This finding implies abnormalities in
cardiorespiratory control and control of sleepwakefulness. We believe that autonomic nervous
system dysfunction causes abnormalities in the
cardiovascular system precipitating arrhythmias,
blood pressure changes, or a shock-like state,
which causes death. Our current work, in collaboration with the Departments of Biomedical
Engineering and Electrical Engineering at the
Viterbi School of Engineering at the University of
Southern California, explores how obstructive
sleep apnea occurs in children. By combining the
expertise of the Biomedical Engineering scientists
with those in Electrical Engineering, we are able
to perform rapid sequence MRIs of the upper
airway, to characterize precisely what is occurring
in the upper airway while breathing during
sleep. In addition, we are performing tests of
neurological control of breathing, upper airway
function, and the autonomic nervous system to
explain why children have complete upper airway
obstruction, why some simply underbreathe, why
some have frequent awakening, and why some
are essentially normal except for some snoring.
These findings will have implications for how
babies breathe, and what may go wrong in babies
who die from SIDS. This study is funded by the
National Institute of Health, and we are studying
research subjects. In the future, it is hoped that
we can translate these findings to infants, but
research must first be performed on subjects who
can cooperate with these sophisticated physiologic
studies.
VOLUME 98
Page 5
S P R I N G is s u e
Continued from Page 3
Physically being there for your friend is sometimes the best thing you can do. Wait for your friend to
talk, and when she does, be silent and listen to everything she has to say. It might take her a long
time to open up, and that's okay. Your physical presence will help her feel loved and cared for.
Caring Across the Miles
If your friend lives far away from you, you can still show support.
Some things you can do include:
 Calling frequently. In the beginning, call a few times a day to
determine how your friend is doing.
 Listen on the phone. Ask your friend how she is doing and wait
silently for a response. Stay on the phone as long as your friend
needs it.
 Send a heartfelt note. Your friend might not appreciate it now,
but as time goes on she will cherish written words to remind her she is loved.
Familiarize Yourself With the Stages of Grief
Your pal needs to work through the four stages of grief on her own terms. One day your friend
might talk as if she is over things, while the next day might be filled with thoughts on why this
happened. Everyone grieves differently and there is no right or wrong way to do it.
It may help to familiarize yourself with the four stages of grief: numbness (which happens right
after the loss), searching (which may include crying or anger), despair (when your friend could
withdraw), and recovery (where your friend starts to get back to a normal routine)
Your friend may take a long time in one phase before moving on to the next, skip one phase, or retreat back to a previous one. Your support will help her move through each phase as she gains
strength to resume her normal life.
Your Gift is
Appreciated !
A Small Boy by John Magliola
A small boy looked at a star
And began to weep.
The Guild for Infant
And the star said,
Survival is a
“Boy, why are you weeping?”
United Way
And the boy said,”You are so far away
Approved
I will never be able to touch you.”
And the star answered,
Organization
“Boy, if I were not already in your heart
GUI300
you would not be able to see me.”
VOLUME 98
S P R I N G is s u e
Put Me In The Corner:
Brawling with Grief
Imagine for a moment that you are a
professional strike artist. A master of the
body shot, and a prolific producer of the
“right hook”. You‟re fast, strong, and
calculating. Anybody who has ever
stepped in the ring with you has found
defeat, whether it be by knockout or
unanimous decision. You‟re unstoppable, unbeatable. The ultimate fighter.
Now imagine you step in the ring, just
like any time before, and as you turn
your gaze upon the foe in the other
corner, you are crushed by fear. Your
chest tightens as you see that they
outweigh you by 100 pounds. The hairs
on the back of your neck stand up as you
notice its reach is greater than yours by
about 8 inches, and your stomach
squirms as you look into their eyes and
see nothing but a void of darkness and
pain. The odds are insurmountable. The
hopes of a win: diminished. This foe is
going to beat you.
Then, from behind you, you hear a whisper, “It‟s ok, you can do this.” You turn
around and see a swarm of faces, some
you recognize and others are unfamiliar.
They look to you and nod their heads in
unison, reaffirming that although the fear
and fight is very real, winning will not be
impossible. One of them reaches out a
hand and lays it upon your shoulder,
looks into your eyes and says, “We are
here for you. We will be your strength.”
The tightness in your chest subsides; the
hair on the back of your neck rests, and
your stomach turns from a roaring squall
to a calm ocean current.
Continued on Page 7
Page 6
Dear Amy,
~For Mother‟s Day~
I‟ve been thinking of you particularly as this
Mother‟s Day approaches. This may be a
tough time for you, and I‟m sure not trying to
make it any harder by writing. I‟m just afraid
that it may be easy for friends to let this
special time pass without expressing any kind
of support.
You see, wishes of Happy Mother‟s Day are in
order for you at this time! In just a few short
weeks, you proved yourself to be a loving,
caring, committed mother. In fact, you poured
out more love to your child in a short time than
some parents do in months and years.
I imagine that there‟s an empty place in your
heart right now. But don‟t let that feeling rob
you of the fact that you are a mother. Right
now people may not know how to address that
fact with you, and they may simply stay away.
There will probably be times and places in
your future when you‟ll be around people who
won‟t even know about your child, but he will
always be a part of you and your life.
So take a bow, and accept my salute to a
mother who has already been an example and
encouragement to so many.
Thinking of you, Danny Mize
Continued on Page 8
REFLECTIONS
P.O. Box 148
Tustin, CA 92781
Reflections is a publication of the Guild
for Infant Survival, Orange County — a
non-profit organization. Reflections is
committed to the collection and dissemination of accurate, up-to-date, scientific
and lay information and the correction of
misinformation related to SIDS.
The
Guild is dedicated to the support of
families and friends suffering the death of
an infant to SIDS.
VOLUME 98
The
Bond
among
grieving
parents
is
close. It is
unfathomable. It cannot be entered
into
by
outsiders, but it is
known to each of us. A quiet look, an acknowledgment
and we know immediately
the agenda of suffering we
have in common and that
there is no fact of our lives
more important than this: I
HAD A CHILD WHO DIED.
Over the months and years,
we will learn to say it more
calmly. Yet, each time we
say it and we must—it is a
part of our learning our own
terrible truth—this heart will
jump, the stomach constrict, the tempo of the body
will shift in acknowledgment: I HAD A CHILD WHO
DIED.
Martha Whitmore Hickman
From ‘SOME THOUGHT FOR
GRIEVING PARENTS”
Guild For Infant Survival,
Orange County
Information:
2130 E. Fourth Street #125
Santa Ana, CA 92705
Ph: (714) 973-8417
Fax: (714) 973-8429
Email Address:
[email protected]
Website Address:
www.gisoc.org
S P R I N G is s u e
Page 7
Continued from Page 6
You have found it. Your confidence. Your strength.
Your will to win.
Now, who is this mystery opponent? Well, it‟s Grief.
The ferocious, blind siding, merciless monster of
grief is there to fight, to beat you down, to overwhelm
you.
Its weight is sorry, its reach is endless, and its deepset eyes are dark. Each person who experiences a
death of a loved one has to step into the ring with this
unmatchable foe, and fight endless grueling rounds
with it. The whole time, death is throwing jabs of
anger, left hooks of despair, and haymakers of regret.
Perhaps you are countering each strike with a happy
memory, maybe you are in denial, or you‟re telling
everyone “I‟m fine”.
But it‟s not enough. Grief seeks to break you. That is
where the man in the corner comes in.
I‟ve never been a huge fan of boxing, but I have always found the idea of the “man in your corner” to be
the best coaching method. They are only a few feet
away, yelling out instructions or boosting their
player‟s confidence. No fancy signs, no whistles, and
no prancing up and down a sideline. The coach‟s
involvement in boxing is personal, beside you the
whole way.
Getting to meet grieving people is what I do. I am one
of those unfamiliar faces, but I‟m there to support and
help.
When you meet someone who has gone through loss,
my challenge for myself, and to each one of you reading this is:

Be that person in the corner. Offer love, care, and
be a presence in their journey.

Be bold. Say what your heart tells you to say, not
what your brain finds more comfortable.
Continued on Page 8
S P R I N G is s u e
VOLUME 98
Welcome Newcomer
I Want to Cry
Just sometime, let me cry.
Do not demand that constant
smile from me.
I know you are uneasy
with my tears.
I need to cry.
Please, do not go away.
I promise you
that I will smile again.
Tomorrow I will be
as light as air.
But hold me now
and let my sorrow be.
Just for today,
this moment let me cry.
Continued from Page 7

Be physical. Physical communication is important, too. Offer a
hug, an arm around the
shoulder, or a two-handed
handshake. If the person isn‟t
particularly touchy, respect that
and find a way of connecting
with them that is comfortable for
them.
The more I think about this notion,
the more I have become fond of
boxing. The man in the corner is a
gift, and I hope to offer myself as
that gift to anyone who needs it. I
hope you, as a reader, will do the
same.
Who‟s corner have you been in?
Who has been in your corner for
you, when you stepped into the ring
with grief?
By Michael of O‟Connor Mortuary
Page 8
Beneath the laughter and the smiles echoes
the anguish of children gone.
Don’t be misled by the superficial joy.
Our normal appearance belies our eternal grief.
We rush to meetings to share details of death.
In better days we would have changed the channel
to avoid these stories of horror.
Priorities change.
Newcomers enter, confused and angry.
They wonder whether these laughing parents
Have truly lost their minds.
(They do not yet realize we do this so
as NOT to lose our minds.)
We know well this anger and confusion.
We remember believing we would never laugh again.
Now, with newfound wisdom, we know it is possible and
necessary to be able to laugh and cry through tears of
grief.
Some day you will know this too.
~Moe Beres, TCF Wichita, KS
Continued from Page 6
Danny,
You will never know how much the note you sent
around Mother‟s Day meant to me. I have been trying
to tell myself all along that even though my son is in
Heaven, I am still his mother. But I needed so much for
someone else to tell me that they recognized me as a
mother.
How you knew how I felt when even my close friends
didn‟t, I will probably never know, but I certainly appreciate and admire you for letting me know. Thank
you. You made Mother‟s Day much brighter for me.
Amy
Love is the only thing that we can carry with us when
we go, and it makes the end so easy.
Louise May Alcott
VOLUME 98
S P R I N G is s u e
Page 9
Graco Recall
Harness Buckle Recall – 2014 Announcement
Potential Problem:
As part of our continuous product testing and improvement process, Graco identified that some
harness buckles can become progressively more difficult to open over time or become stuck in
the latched position. Therefore, we have decided to conduct a voluntary recall on the harness
buckles used on select toddler convertible car seats and harnessed booster seats. As a solution, Graco offers a new and improved replacement harness buckle to any consumer who may
be experiencing difficulty with their harness buckle at no cost. Consumers are encouraged to
place their order for a replacement harness buckle using our online order form. Graco would like
to stress that our car seats are safe and effective in restraining children. You can continue to
use your car seat while waiting for your new buckle.
Injuries Reported: 0
Number of Units Affected: 3.7 million
Dates Produced: See chart below
Models Affected:
Model Name
Argos 70
Argos 70 Elite
Classic Ride 50
10/1/2011 through 9/30/2013
Comfort Sport
Ready Ride
10/1/2010 through 9/30/2013
Cozy Cline
Toddler SafeSeat - Step 2
My Ride 65
My Ride 65 with Safety Surround
My Ride 70
My Size 70
Size4Me 70
Head Wise 70 with Safety Surround
Nautilus 3-in-1
Nautilus Plus
Nautilus Elite
Smart Seat
Smart Seat with Safety Surround
Solution:
Dates Produced
5/1/2011 through 7/31/2013
1/1/2006 through 4/30/2010
4/1/2009 through 7/31/2013;
and 9/30/2013*
5/1/2012 through 7/31/2013
1/1/2012 through 7/31/2013;
and 8/3/2013*
10/1/2007 through
7/31/2013; and 8/19/2013*
12/1/2010 through
9/30/2013; and 10/9/2013,
12/25/2013, 1/10/2014*
Parent Support Meetings
Who better to soften the wounds of another
than he who has suffered the wound himself?
Thomas Jefferson
All meetings are from 7:00—8:30 PM. Meetings are hosted by Colleen Ma
and Penny Stastny and take place at the Guild for Infant Survival, Orange
County office located at 2130 E. 4th Street, Suite 125, in Santa Ana.
* Please RSVP to Barbara Estep at (714) 973-8417 prior to the meeting
April 14
May 12
June 9
Spanish Speaking Support Meetings
We are excited to announce Spanish speaking support meetings. If you would like more information, please contact the
Guild office at (714) 973-8417 or [email protected].
Business Meetings– held at a private home.
Call for directions. Meetings
begin at 7:00 PM. If you would like to have an item added to the agenda, please
contact Barbara Estep at (714) 973-8417.
*Please RSVP to Barbara Estep at (714) 973-8417 prior to the meeting.
May 20
August 26
Page 11
S P R I N G is s u e
VOLUME 98
Memorial Donations
In Memory of
Jason Alexander Robar
Robert and Susanna Robar
Mr. & Mrs. Ryan L. Robar
Mr. & Mrs. Tony Bancroft
Ms. Julie Marie Robar
Mrs. Clara Marie Shutz
In Memory of
Sarah Ashley Robbins
Mrs. I. H. McCormick
Special Thanks
We appreciate the
Employees Community
Fund of Boeing California
and thank them for their
generous grant, helping
the Guild to help others in
our community.
This newsletter is being published
thanks to a grant from Wells Fargo
Foundation.
Grants
We extend our deep
appreciation to the CJ
Foundation for SIDS for
their continuing support
of the Guild. They help
us to help others in the
Sudden
Infant
Death
Syndrome community.
Thanks
also
to
The
Orange County Walk to
Remember
and
their
grant for our OB/GYN
community outreach.
Professional Library
Sofka, C.J., Gilbert, K.R. & Cupit, I.N. (2012). Dying,
Death, and Grief in an Online Universe. New York:
Springer.
The book offers a broad overview of how the
communication technology revolution affects
individuals coping with end-of-life issues, death
-related and non-death loss and grief, and
implications of the "digital divide" between
those who are knowledgeable about and have
access to modern technology, and those who
are not. It describes the proliferation of online
support groups and social network sites to cope
with loss, and mechanisms for the memorialization and commemoration of loss. It also
highlights blogging as a mechanism for
storytelling and SKYPE as a communication tool
during times of loss and grief. The unique issue
of disenfranchised grief
experienced by online
community members is
also explored along with
ethical issues. Appendices
provide guidance regarding the online availability
of different types of
informational
support,
tools to evaluate the
integrity
of
online
resources, and ethical
standards.