First-time mom Maricela was overjoyed at the arrival of her beautiful baby girl Kenia. But just 10 hours after Kenia was born, a nurse at the hospital noticed that her lips were a shade of purple. Something that just wasn’t right. It was quickly decided that Kenia needed to be transported to Lurie Children’s.
What came next was a total shock for Maricela and her husband. Their baby girl was diagnosed with transposition of the great arteries, a congenital heart defect where the heart has opposite anatomy of a normal heart. Kenia’s pulmonary artery and the aorta are reversed. The aorta is connected to the right ventricle, so most of the blood returning to the heart from the body is pumped back out without first going to the lungs. The pulmonary artery is connected to the left ventricle, so most of the blood returning from the lungs goes back to the lungs again. Therefore the red, oxygen-rich blood remains red and the oxygen-poor blue blood remains blue.
“I had a very healthy and normal pregnancy. Nothing to lead me to believe my baby girl had a heart condition so the news came as a total surprise,” says Maricela. “We were very scared. She’s my first baby.”
At one week old, Kenia underwent open heart surgery, but suffered set-backs afterwards, including experiencing cardiac arrest four times. Her medical team decided that Kenia’s only chance of survival was a heart transplant and listed her for a heart transplant on February 20, 2018.
Kenia, who has been in the hospital for most of her life- only spending 22 days of her 9 months at home, continues to wait for her new heart in the Regenstein Cardiac Care Unit. Her mom says, “Before we went through all of this with Kenia, I had no real knowledge about organ donation or how great a need there is but since our time here in the hospital, I am now proud to say I am a registered organ donor.”
While Kenia waits for a donor heart, she has time to grow and get stronger. She works closely with Lurie Children’s physical, occupational and speech therapists to meet developmental milestones.
“This journey has been hard and the wait is difficult. We have been living in the hospital for 9 months,” says Maricela. “My hope for Kenia is that she gets her new heart and that she recovers strong. The ultimate goal is that we can bring her home and she will have her future before her. She’s my super Kenia.”
Lurie Children’s is ranked 3rd in the nation for child cardiology and heart surgery by U.S.News & World Report. The Heart Center at Lurie Children’s provides the highest quality care for patients with the most complex and serious heart conditions. As the region’s largest children’s heart center, we care for more patients with cardiac conditions than any other hospital in Illinois.