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The Opportunity that Every Baby Deserves

  • As I ponder how my life collided with newborn screenings, I reflect on the changes over the last several years.  In the days before I could recite medication schedules and medical jargon, I spent my days teaching middle school students American history; after school I picked up our healthy toddler James from day care, made dinner, and spent time with our little family of three.  Life was not perfect, but it was under control.

    Then, life spun out of my control.

    Our family of three was about to become a family of four.  I had visions of our new baby attending day care with James and fitting in perfectly with our orderly family schedule.  At twenty weeks, I had a routine ultrasound to learn our baby’s gender, in my opinion.  Little did I know they were also checking vital organs – including my boy’s heart.

    I clearly remember that November afternoon in 2010 when the doctor told us that our baby was missing a heart valve which resulted in hypoplastic right heart syndrome, along with a list of other heart defects – essentially half a heart.  Within an instant, my structured, predictable life was gone.  After I gave birth to Jonathan on March 16, 2011, he had open heart surgery at six days old and complications kept us at the hospital for months.  Even once he could come home, we traipsed in and out of the hospital for additional open heart surgeries, illnesses and infections, and countless other procedures.  When I looked back, the disruption of my old life could be pinpointed to the day of the ultrasound.  At that time, his diagnosis felt like a curse that stole my dreams for our boy. 

    Fast forward a year a half to summer 2012.  Jonathan was finally home for a stretch.  But the roles were reversed, and I was the patient this time, recovering from surgery.  As I rested, I laid there with my laptop computer, bored and frustrated that I was forced to sit still when my boys needed their mommy.  One day I stumbled across articles about newborn screenings, specifically recommendations for pulse oximetry screenings for critical congenital heart disease (CCHD). 

    As I scanned dozens of articles, I realized Jonathan’s prenatal diagnosis was not as common as I had thought.  My stomach churned as I learned that many newborns with CCHD are sent home from the hospital without a diagnosis.  As their fetal heart changes to the newborn heart circulation, these seemingly healthy babies are at high risk of death or disability.  It can be prevented, though.  Goosebumps ran down my arms as I read that there is a simple test that can detect CCHD.  Pulse oximetry is so easy, inexpensive, and noninvasive that my son wears a pulse ox monitor while he sleeps every night. 

    I learned that some states added pulse ox screenings to their newborn screenings, but not Iowa.  Thankfully, Iowa babies have the opportunity to be tested for forty-five disorders and conditions, yet not the most common and deadly birth defect – congenital heart defects.  Some hospitals are voluntarily screening for CCHD, but not all.  I knew I could not just sit there.  I had to do something. 

    Since then, I have been working to ensure that all newborns in Iowa have the opportunity to have their heart screened.  Bigger than pulse oximetry tests, though, I have learned that education about newborn screenings in general is needed.  When our older son James was born, I distinctly remember hesitating and considering declining the test (Iowa is an “opt out” state) because I did not want my beautiful baby to feel pain from the heel stick.  I am now appalled to think I was ever so uneducated.  I had no idea how a seemingly healthy child can have a life-threatening disease, but with early intervention, miracles happen. 

    My perspective has changed regarding Jonathan’s diagnosis.  At the time, his diagnosis was a devastating blow that seemed to steal my baby’s future.  Little did I know it was a gift.  Since Jonathan had a prenatal diagnosis, he was born at a heart hospital where the cardiologists and cardiac-thoracic surgeon were anticipating his arrival and creating a treatment plan.  Jonathan had a chance at life thanks to early diagnosis.  Today, despite the many challenges ahead of him, my sweet two-year-old boy loves to roughhouse with his older brother, read books with his dad, and snuggle with his mommy.  It is truly a privilege to be his mom.                  

    Every baby deserves this opportunity. 

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