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My name is Claudia and I would like to share
my story with your readers.
On January 12, 2005 my son Matthew died to a condition called
vasa previa. Until labour I did not know I had this condition
as I had seemed to have had a pretty normal pregnancy. After
being induced at the hospital and spending over five hours
in labor everything suddenly changed. When there was chaos
and the doctors and nurses where taking me quickly down the
hall to the operating room and “code pink” was
being announced through the hospital’s PA system, I
knew something was terribly wrong. The anesthetist increased
the epidural and I had an ‘emergency’ cesarean.
I gave birth to twin boys (Twin A Matthew and Twin B Steven)
but Matthew was in critical condition. He was pale, not breathing,
had no movements and no responsiveness. Matthew did not survive
and passed away that same afternoon.
Vasa previa is a devastating condition that is not well known
but is more common than people think. The fetal blood vessels
travel for some distance freely and unsupported through the
membranes instead of within the umbilical cord. When contractions
begin, the fragile vessels that cross the birth canal rupture,
nearly always causing the infant to bleed to death.
Vasa previa is a rare condition (1 in every 2,500 pregnancies)
but it can be diagnosed before labor as early as into the
16th week of pregnancy. The technology to detect vasa previa
exists but is not often used (a transvaginal color Doppler).
When diagnosed, a woman will have a scheduled cesarean and
the infant survives almost 100% of the time.
Creating awareness and funding for vasa previa prevention
is very important to me. I also want women to understand the
risk factors so that they can be spared the pain that our
family has gone through. Some of the risk factors include:
a low-lying placenta, placenta previa, multiple pregnancies,
in-vitro fertilization pregnancies, a history of uterine surgery,
painless bleeding or a D&C. A D&C is considered a
risk factor as this procedure has the potential to cause uterine
scarring. Anything that can cause uterine scarring can potentially
cause a low-lying placenta which is the main risk factor for
vasa previa as velamentous cord insertion and multi-lobed
placentas are thought to develop as a low-lying placenta moves
up. Also, from what I have read, the risk factors for vasa
previa increases with every pregnancy due to the wear and
tear on the uterus. The more damage done on the uterus, the
harder it is for the placenta to implant on areas of the uterus
that have a better blood supply.
The reduction in the fetal mortality from this condition depends
on prenatal diagnosis; this is the key to a baby’s survival.
When vasa previa is found before labor, the baby has a 100%
chance of surviving.
Sophie’s Walk (in memory of Victoria Goldstein’s
daughter who died to vasa previa in 2001) took place through
The International Vasa Previa Foundation this year in 50 cities
throughout the world. I held the walk for vasa previa this
year on Sunday October 1, 2006 in Woodbridge, Ontario.
I have been in contact with many doctors in the Obstetrics
community and also with The Society of Obstetricians and Gynaecologists
of Canada (SOGC) trying to make positive changes for future-moms-to-be
to set a standard of care for women with the risk factors
mentioned above. Although some doctors agree that there should
be a set standard of care for women with the risk factors
mentioned above, others think that it is simply just trying
to reinvent the wheel. It has been fustrating for myself and
for others parents who have also lost a child to vasa previa
as many also are fighting to make changes not only in Canada
but the United States and the U.K.
My family and friends have been a great support. Also attending
bereavement meetings and joining The International Vasa Previa
Foundation has been very beneficial to me. If I can save at
least one baby from this silent killer, then I am glad I can
be the voice.
We are so incredibly happy and blessed to have Matthew’s
twin, Steven, in our lives but his brother’s death has
certainly been the worse thing imaginable. There is nothing
more horrible in life than losing a child. Time does help
heal but you never forget.
We have also been recently blessed again with a daughter,
Erica, who was born on August 21, 2006 . During this recent
pregnancy, I went to a high risk doctor, at a downtown Toronto
hospital, who was aware of the vasa previa condition and checked
for it during my pregnancy at 20 weeks and thank goodness
this anomaly was not present. However, I chose to have an
elective cesarean and thank God everything went well, although
upon delivering her, my husband Dominic and I were overwhelmed
with emotions.
Erica is so sweet and beautiful! She is now just over 2 months
old and I never knew I could have so much love for her. I
was so attached to Steven and the loss of Matthew that I did
not know how I would be with a new baby but let me tell anyone
who has lost through a miscarriage, stillbirth or neonatal
death (as in Matthew's case) and may be afraid of trying again...it
is worth it 100%. Two important things to always keep in mind
is to have faith and hope...and believing in this you can
overcome anything in life. My life is not the same as it use
to be prior to delivering the twins and I now have learned
to live a new or different kind of 'normal'. However, I know
that Steven and baby Erica need me as much as I need them.
I adore them and they are my world!
I ask all the readers to please help me and also consider
creating awareness on this devastating condition called vasa
previa as it kills 95% of afflicted babies when not diagnosed
prenatally. 95% of babies diagnosed prenatally survive and
are perfectly healthy. As mentioned, diagnosis is made through
transvaginal color Doppler ultrasound, but since it is not
yet standard of care to look for vasa previa, otherwise healthy
babies die unnecessarily.
Being a member of the International Vasa Previa Foundation
and we are on a mission to raise awareness so nobody else
has to live through losing a child to this condition.
If you would like to know more about vasa previa you may visit
the website I have created in tribute to my son Matthew at:
www.ourangelmatthew.com
or you can also visit The International Vasa Previa Foundation’s
official site at: www.ivpf.org.
Thank you for listening to my story.
Sincerely,
Claudia DiVirgilio
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