Jonathan’s Story: The Importance of Newborn Screening

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I once lived in a world where my kids would always be healthy, not deal with chronic illness, and never pass away unexpectedly. Now I know differently.

When I took our oldest son, James, to his first pediatrician appointment five years ago, I remember the doctor saying, “I wish all babies were as healthy as him.” I smiled and took my rosy-cheeked boy home, not taking time to wonder about the other children the doctor referred to.

Two years later, I remembered the pediatrician’s words as my husband and I looked at an ultrasound of our younger son, learning that our Jonathan had a list of critical congenital heart defects resulting in, essentially, half a heart.

Jonathan (2) and James (4)
Jonathan (2) and James (4)

At the time, the diagnosis seemed like a curse, robbing my sweet child of a healthy childhood. It took me years to realize this early diagnosis was actually a gift, allowing Jonathan a chance to live. Before he was even born, doctors created a plan to make his half a heart work for his whole body. In order to do this, major open heart surgeries were needed when Jonathan was one week old and again at four months old.

As we spent time in doctor’s offices and hospitals, we met many families with stories – some that ended happily and others that did not. A common thread was that children with early diagnosis got treatment earlier and often had better outcomes. Tears flowed as I talked with moms who had lost their babies, only to learn from an autopsy their child had heart defects that could have been treated with surgery.

As a result, our family began advocating for newborn screening, a series of tests done between 24 hours and five days of age which detect treatable conditions that could lead to serious health consequences. Last spring we spent many days at the state capitol, encouraging lawmakers to add a heart screening to the list of Iowa’s tests. Each state has its own tests and procedures; in Iowa newborns had their hearing and blood tested for more than 45 conditions. However, heart screenings were not included. A simple, inexpensive, painless test using a pulse oximetry monitor could determine the amount of oxygen in the blood and detect critical congenital heart defects, like Jonathan’s.

Thanks to the hard work of many families across the state and support from the American Heart Association, babies in Iowa now have their hearts screened and receive the treatment they need before it is too late.

We were excited that newborn hearts would be tested, but few of our friends were even aware of newborn screening. To raise awareness, last spring our family collaborated with the national nonprofit Baby’s First Test to create educational materials for families. Written for young children, these free printable coloring books describe a baby’s hospital stay, including the newborn screening, from the sibling’s point of view.

James and Grace
James (5) and Grace (1 month)

As our family prepared for the birth of our third child this fall, we used these coloring books with five-year-old James and two-year-old Jonathan. Little did we know that Jonathan would never get to meet little sister Grace. His lungs and heart failed twelve days before she was born.

Although Grace will never get to see her brother’s sweet smile, her heart was tested using the pulse oximetry monitor, just like he advocated for. I never would have guessed that Jonathan’s time with us would be so short, but I am thankful for each beautiful day with him.

If you know someone who is expecting a little one, please let them know about this free printable coloring book that describes newborn screening during a child’s visit to the nursery. For more information about newborn screening, visit www.babysfirsttest.org


Meet Guest Blogger Sara Lockie

Sara LockieSara Lockie is a classroom teacher turned caregiver/stay-at-home mom when her chronically ill younger son was born. For two and a half years, she took on the role of nurse, managing medication schedules, medical equipment, and doctor’s appointments, all while loving and caring for her sweet little boys. Today, Sara is wife to her best friend Kyle and mom to their three kids, one who lives in heaven. In her spare time, she enjoys reading, baking, spending time with family and friends, and advocating for newborn health initiatives.

 

 

 

3 COMMENTS

  1. Sara,

    thank you for sharing your story. As I was reading, I thought this story sounded somewhat familiar and then I realized that our boys go to the same Pre-K program. What an amazing, brave little boy your family was blessed with and that heaven has gained. Thank you for advocating for these tests to be added for the screening of newborns. Will continue to keep your family in my thoughts and prayers.

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