Doctors, Families Rally for Cure for Deadly Birth Defect

Parent's Perspective News Report of Saint Louis Children's Hospital Press Conference

Tuesday, March 27, 2012

Face of CDH - Noah's Miracle

In His Parents Words: 

The storm began on January 4, 2010, my husband and I was expecting our first child Noah.    With him, being our first born, we had high anticipation about the delivery process and becoming first time parents.  During the delivery we had our worst fear confirmed.  Noah’s heart rate had dropped with every contraction, and a rapid assisted delivery was now required.  After a few difficult moments he was delivered but was whisked away to be resuscitated.  The nurses and doctors confirmed that he had a birth defect known as Left-sided Congenital Diaphragmatic Hernia (LCDH).  Noah was transferred to Children’s Mercy Hospital in Kansas City, MO.

Fortunately, my husband and I did not know the statistical outcomes for CDH.  Therefore, our focus was on a day to day evaluation of our son’s status.  The days were very long and seemed to be eternal.  Our focus was moment by moment, with expectations of a breath, hiccup, wiggle, or eyes opening.  I knew there would be no recognition of us, but any response to our voices or touch gave us hope.  Since he was on a ventilator for breathing assistance we were unable to hold, touch, or stimulate him for fear of increasing his breathing difficulties.  As each agonizing moment went by, his team of specialized physicians relayed more information on CDH and decisions we would have to deal with in the upcoming hours.  On day 2, Noah underwent the CDH repair that involved a thorascopic procedure that wasn’t very invasive.  Happily, our son was among the few that were able to correct the defect by a primary repair.  On the morning of day 3 we received a call from the NICU nurse, she told us that Noah was going to be extubated that morning.  As we were driving to the hospital, we noticed the biggest rainbow in the sky.  At that moment we knew that Noah had survived his storm.  We were very blessed that his hospital stay was only one week. 

Our son’s future routine medical examination will include a chest x-ray every six months to make sure there is no reoccurrence.  During his childhood, he will visit a team of specialized physicians that will manage his childhood development.  This team of medical professionals include:  neonatologist, dieticians, psychologist, audiologist, and his surgeon.

CDH is an unpublicized nearly unrecognized devastating birth defect that affects many families every day.  Most people do not know anything about CDH, unless they have a loved one that has been born with this unfortunate defect.  Advances in surgery and therapeutics have not shown great promise.  Therapeutics sustains life minimally.  The future is unknown for diagnostics and treatments.   Worldwide one baby is born with CDH every ten minutes.  The sheer number of infants affected by this disorder should challenge the scientific community to research other avenues of diagnosis and treatment.  Please help our family raise awareness of this monstrous birth defect in honor of the angels and survivors of CDH.


David, Tera, and Noah

We are positive Noah will never stop going forward!


valbedell said...

I was so touched by your story and the way this article was put together with the pictures and the ending sentence," We are positive Noah will never stop going forward"! It brought tears to my eyes. I don't see you guys as often as I would like but I do cherish each visit we have and loved taking Noah's pictures. I'm so glad he is moving forward leaps and bounds!!

Mommy Milnes said...

What beautiful story of hope, Tera. I can't imagine how difficult this was to experience, and is still a struggle today. As a parent, it brought tears to my eyes. What a gift to see the rainbow on your way to the hospital!! Noah is such an adorable little guy. Thank you for sharing your story and bringing more awareness to this disease. I had never heard of it before you.

Mommy Milnes said...

What a beautiful story of hope, Tera. I had no idea that your family experienced all of this. Noah is a such an adorable little guy. What a blessing your family is to bring light to this disease. I had never heard of it before and your story is very touching.