For seven years families across the United States have been
writing their Mayors, Governors and other officials requesting Proclamations to
bring awareness for congenital diaphragmatic hernia. We have always known that from awareness
brings more research. Over the last few
decades survival rates have increased from 50% overall to about 67%. Our NIH is also more involved thanks to the
many families who have contacted their legislators and made them aware of this
often unheard of birth defect. It is
through the efforts of families and friends who have fundraisers to help
families, raise awareness or raise funds for medical research that we educate
our communities. One day we hope
families who contact us will have at least heard of CDH prior to their newborn
or unborn child being diagnosed.
This is also a month that many families reflect on the
experience of the diagnoses, of when they first became aware of CDH. To be told your unborn or newborn child may
die is not what we expected to hear when we had our ultrasound or gave birth. Families who have had their child choose
wings over feet want to educate others not just in their child’s memory but so
others are perhaps more prepared than they.
Those who have a child come home are all too aware of the struggles of
taking care of a child with medical needs or if they don’t have them, worried
that one of the other accessories which sometimes coincides with CDH will
appear. Some say they “hate” CDH or CDH “sucks”,
no argument there it is something battled every day by organizations, hospitals
and families. We hope one day it is more
manageable and less mysterious so doctors will not have to tell a family, “we
have done all we can do”.
There is a hidden oasis in the diagnoses, the people and
families you meet through the experience are the people you want in your
life. Strangers from across the nation
will step up and help when some friends may have bailed on you. The doctors and nurses we meet on our journey
we learn the profession chose them, they go the extra mile and they work hard
so all families will bring their babies home.
Their hearts are in it.
As you reflect on your own awareness this month, also
reflect on all the blessings and amazing people who have been brought into your
life through CDH. Congenital Diaphragmatic
Hernia is twofold, bad and good – just as life, it is how we roll with it that
makes the difference.
If you would like a graphic ribbon with your child’s name on
it, as below, please feel free to email Elizabeth@breathofhopeinc.com
or Private Message our Breath of Hope Facebook Page. It is a pleasure to make these for families –
they are yours to use any way you wish and we are happy to enlarge them or
provide different file formats if you need them for shirts or printing!
