Parents are always saying how thankful they are for the blessings their children bring to their lives. We all dream of raising our healthy children to adulthood and make painstaking efforts
to allow their launch into the world the best it can be. For some, however, thinking
about the future is met with heartache. The focus for these parents is not on
the distant future so much as it is the here and now. For these few,
having their children for now is all they can be certain of. For some unknown
reason that I cannot begin to understand, God’s plan for some children is not
to have them here with us on Earth for very long. This blog post is about one
such instance wherein God called one of his children back to heaven much sooner
than his parents would have hoped.
Max Richard Thornsbury was born on December 19, 2010 at 9:57pm. He was born into a loving
family with parents Shawn and Erin Thornsbury, two big sisters Zoe and Ava, and
big brother Ian. The event of baby Max’s birth was not as commonplace as it
would first seem due to a pre-diagnosed medical condition called a Congenital
Diaphragmatic Hernia. This CDH, as it is more commonly called, would change the
course of this family’s journey forever.
The following is an excerpt from the website dedicated to baby Max’s memory…
“Miracle Max, as he was called, was a very special little boy.
He was diagnosed with CDH when Erin was 20 weeks pregnant. He was not given a
high chance of survival at birth, but Max was a fighter and came out ready for
a fight. He defied the odds and continually surprised the doctors. But God had
other plans for little Max and decided that heaven needed another sweet angel.
It is never easy to understand God’s will when such a young life is taken, but
it is undeniable that in his short 54 days Max touched the hearts and lives of
so many.” (www.maxrichardthronsbury.org).
What is a Congenital Diaphragmatic Hernia / CDH? “Congenital Diaphragmatic Hernia/CDH
is a defect in the diaphragm of the fetus. The diaphragm is the muscle and
tissue that separates the chest and abdominal cavities. In Congenital
Diaphragmatic Hernia/CDH, abdominal organs push into the chest cavity through
the defect (or herniate), compressing the developing lungs. This results in
severe pulmonary hypoplasia (arrested development of the lungs), causing the lungs
to remain small and underdeveloped.” (www.fetalcarecenter.org).
If you’re like me, you have little to no knowledge of this condition. I wish my lack of
knowledge was due to the rarity of CDH, but unfortunately, according to www.fetalcarecenter.org,
the “incidence of Congenital Diaphragmatic Hernia/CDH is estimated at one in 2,200 births.” During
an interview with local newspaper, The Suburbanite, Max’s mother, Erin stated that CDH “is actually pretty common, but yet nobody knows about it. That is why I feel that God gave us Max. I have a big
mouth for one and I tell everybody. Secondly, we started a non-profit organization in Max’s name.”
It is the second part of Erin’s quote that leads me to write this post.
While other family’s might find it too difficult to move forward, the
Thornsbury family has used their faith to propel them in advocating for more
research in the hopes of helping other children born with this condition. I
find it admirable that a family can find such strength after having to see
their youngest baby move on to heaven before any of them were ready to say
goodbye. To honor this strength and baby Max’s memory, I encourage each reader
to take the time to learn more about CDH and its related causes.
To begin educating yourself about CDH, I recommend you visit
the website dedicated to baby Max’s memory at www.maxrichardthornsbury.org.
There you will learn more about the story of this beautiful baby and his
family. This website also provides links to other helpful resources. I also
recommend you visit Max’s facebook page www.facebook.com/MaxCDHpage
for information regarding ongoing advocacy also honoring baby Max’s memory.
If you live in the Cleveland area, I recommend you make the effort to attend “Max’s CDH Awareness 5K Run/Walk and Max’s Mile for Kids Run hosted this Saturday September 10, 2011 at Green High School Memorial Stadium 1737 Steese Road Uniontown, OH. All proceeds from this event will be donated to Cincinnati Children’s Hospital CDH Research Team. Visit www.rsracingsystems.com for registration information for this event. More information regarding this wonderful event can
be found at www.maxrichardthornsbury.org under “events” or at www.facebook.com/MaxCDHpage.
To help by donating in other ways, visit www.cafepress.com/cherubs/776973
to purchase items bearing Max’s ribbon to promote awareness. Helping in this
way is linked to the CHERUBS organization. CHERUBS stands for The Association of Congenital Diaphragmatic Hernia Research, Awareness and Support. According to its website, this organization offers “many free services to all CDH families including support forums, newsletters, blogs, conferences, parent matching, HOPE tote bags, on-call parent support and local support
services.” I can only imagine how invaluable such support would be to families
faced with such a heartbreaking challenge as CDH. There is information on the
CHERUBS website at www.cdhsupport.org.
After using the above websites to educate yourself on the condition of a Congenital
Diaphragmatic Hernia, I recommend you use your new knowledge to educate others and
also to cause a positive change by advocating for more funding for needed CDH
research. You can do so by contacting your representatives and by visiting www.cdhbills.org.
The following is a quote recently posted on Max’s CDH awareness facebook page… “When
a baby is born, it’s a mother’s instinct to protect the baby. When a baby dies, it’s the mother’s instinct to protect their memory.” Author Unknown. I encourage you to do all that you can to honor the memory of this beautiful baby by educating yourself and others about this condition and in furthering the efforts of all CDH-related advocacy and support networks. Prove the Thornsbury family right in showing that even the tiniest angels can make the biggest difference.
Kagarise, A., The Suburbanite: Max’s Life Remembered in New Mission
for Family. August 2, 2011.