Newborn Screening Family Stories: Aria's Story - Minnesota Dept. of Health

Newborn Screening Family Stories:
Aria's Story

Image of Aria as a baby snuggling with momAfter a completely normal pregnancy and delivery, Aria came into this world. Aria has an older sister, and I often worried "how could I possibly love another child as much as I already love Harper." Immediately following her birth, we fell in love with our beautiful baby girl. From the moment we laid eyes on Aria, our love was fierce. While holding our beautiful daughter, she looked into my eyes, and I knew something about her was "different" than anticipated. I looked around and without hesitation stated, "I think Aria has Down syndrome." The doctors and nurses looked her over and they all disagreed with me. However, my gut feeling told me I was right. Later, I asked the opinion of another physician who also said, "Nope, she does not have Down syndrome." Little did we know that in the next 48 hours our lives would be completely thrown for a loop and our "perfect" baby would soon become a fierce warrior fighting for her life.

As we were packing our bags to go home, the nurse came in to do our last newborn screening test, the heart screen. I vividly remember this moment because everything from this point on became a nightmare. The nurse placed the pulse oximetry sticker around Aria’s hand, and she failed. She looked at me and said "Don't worry mom. Only kiddos with major heart defects have failed this, so you have nothing to worry about." The nurse then put it on Aria’s foot, and she failed again. Things became scary as they called a neonatologist and started placing Aria on very fast flowing oxygen. Aria hated it and screamed. Inside my husband and I were screaming too. We cried in fear that something terrible was wrong with our once "physically perfect," beautiful daughter. After several tests and an emergency echocardiogram, my suspicions were confirmed, Aria had Down syndrome. However, the scary part was that she also had a major heart defect; a balanced, complete atrioventricular septal defect (AVSD), which is a common heart defect in children who have Down syndrome.

After 56 days in the NICU, we took our sweet Aria home.  Our next mission was to help her grow for she would soon become a heart warrior and endure open heart surgery. After Aria's first heart surgery, things became yet another nightmare. A far worse nightmare. A nightmare that lasted well over 100+ days in the hospital, including a cardiac arrest and a second open heart surgery. Our beautiful daughter is an amazing warrior. She is strong, beautiful, and she never gave up. We are currently at home loving every second with Aria. She is doing great, and we hope to never have another heart surgery again. 

Image of Aria at 12 monthsLooking back, I realize how a simple test, the pulse ox test, helped save our daughter’s life. Without the pulse oximetry test, we would have taken Aria home not realizing her heart wasn't pumping efficiently or that she was not actually getting the correct amount of oxygen she needed to thrive. I will forever be grateful for that test! I want to personally thank everyone involved in newborn screening. Without the pulse oximetry test, I don't know where things would be today. Thank you, thank you, thank you! From the bottoms of our hearts, we thank you!

The Carlsons
Jeremiah, Melia, Harper & Aria