1 of 100 Babies is Born With a Congenital Heart Defect Each Year; What if it Was Yours?

That one was mine. My second son was born with an undiagnosed congenital heart defect 18 years ago. 

He was my “planned to a T” baby. I was a healthy young woman, did not drink or smoke, nor did I let let anyone near me smoke. I took prenatal vitamins, went to routine prenatal doctor visits and even had a normal pregnancy ultrasound. There was never a reason to second guess that our baby wouldn’t be born healthy as I had a full-term healthy pregnancy two years prior. 

I did everything I was suppose to but never could have planned for the day my world was shaken to its core.  A day I, and 40,000 other parents a year, could have never planned for.

After a long labor, Ryan was born Nov. 22, 1993. I suppose I didn’t want to see that his color wasn’t right at birth. I proudly held my swaddled little baby boy for a brief moment, smiled to have a quick picture taken by my husband only to have the nurse whisk him off.  

Then I knew something was terribly wrong, there was scurry about the delivery room with many nurses and doctors.  What seemed like hours later was my doctor telling me something was seriously wrong with our beautiful 8-pound, 13-ounce son.  How could this possibly be?  Certainly they must be wrong because this was not according to my plan!

The hospital quickly arranged transportation to Children’s Memorial Hospital in Chicago while Ryan was placed under an oxygen tent and sedated heavily. Our little baby wired up to machines and needles lay motionless as we said goodbye to him, praying we’d see him at children’s that evening.

Later that morning, separated from my newborn son 35 miles away, the specialists at Children’s called to tell us Ryan had a critical congenital heart defect, a defect which results when the heart or blood vessels near the heart don't develop normally before birth from unknown causes. 

His diagnosis was called Transposition of the Great Arteries which basically meant that his heart was “mixed up”.  His pulmonary artery and aorta were switched and he would have to undergo a life-saving open heart surgery.  

The next 15 days prior to his arterial switch surgery were touch and go as he continued to lay motionless due to all the medications being pumped into his little body. 

We wouldn’t even hear him cry until he 21 days old and even then it was a weak little cry due to his throat being so sore from the weeks of being on a ventilator.  The wonderful doctors and nurses at Children’s Memorial Hospital, along with the support of our family and friends, helped us during this very difficult time.  Ryan was a warrior and made it through surgery.  At exactly 1 month old he came home. We couldn’t have asked for a better Christmas present EVER!

We celebrated Ryan’s 18th birthday this past November – my sick little baby who has grown into an amazing HEALTHY young man who will graduate this year from ! Sadly many other parents don’t have 18th birthday parties, some don’t even have 1st birthday parties. 

Congenital heart defects are the No. 1 birth defect in the United States. The Centers for Disease Control & Prevention reports that congenital heart defects are a leading cause of infant death from birth defects during the first year of life.  I’ve spent years wondering why this happpended to my baby. While I have found no answers, I have recently found an organization where other parents find ‘Hope, Help, Healing’.

Mended Little Hearts

Mended Little Hearts, started in 2004, is a national support program for parents and caregivers of children with heart defects and heart disease, and is dedicated to inspiring hope in those who care for the littlest heart patients of all.  Mended Little Hearts offers resources and a caring support network as families find answers and move forward to find healing and hope.  It would have been amazing 18 years ago to connect to other parents of children with heart defects as we felt alone, even though we had amazing family support.  I am proud to be involved with this amazing group of heart families! 

Mended Little Hearts is celebrating Congenital Heart Defect Awareness Week from Feb. 7 through Feb. 14.  While we continue to raise awareness, we are also working to help the heart families of the Chicago area. 

Mended Little Hearts of Chicago is coordinating a Care Bag Drive for the month of February to primarily benefit the families at Children’s Memorial Hospital.  Children’s Memorial Hospital sees approximately 300 cardiac surgery patients a year. Mended Little Hearts provides care bags to let families know that someone cares and that they are not alone. 

Many children with CHD are sent to Children’s Memorial Hospital of Chicago from suburban hospitals or even from another state (sometimes by ambulance or helicopter with only a moments notice) to have surgery. We met many parents who had nothing more than the clothes they were wearing and the contents of their wallet or purse with them as they sat by a hospital bedside hoping that their child survived.

Mended Little Hearts provides items such as travel-sized toiletries, non-perishable single serving snacks, playing cards, crossword puzzle books, coloring books and crayons, stuffed animals and baby blankets to name a few.  A full list of items Mended Little Hearts is collecting can be found at www.mlhchicago.org.  

at 120 Veterans Parkway in New Lenox has graciously offered to be a drop-off location. Monetary donations and corporate sponsorships are also gladly accepted through the secured site to help offset the expenses of the bags as each costs approximately $35 to assemble. 

Given that Children’s Memorial Hospital sees approximately 300 cardiac surgery patients a year, MLH of Chicago is seeking donations of ANY kind year round as our annual need is approximately $10,500.

Many times I look back on that earth-shattering day and wonder why did this happen to my son, why didn’t everything go according to my plan?  Then I realize I am not in control and see that Ryan and I have different plans than I first imagined. 

I believe my plan is much larger than he or I, simply it is to help make a difference—a difference providing ‘Hope, Help, Healing’ to so many other heart families like Ryan and I.  Please consider making a difference too.

Learn More

For more information, please go to www.mlhchicago.org.  For more information regarding this drive, corporate sponsorship or CHD Awareness Week, please contact Christine Olson at 708-502-4443 or e-mail colson@mlhchicago.org.