As Pete's "Patient Partner", Jaelani continues to inspire us in our mission to raise awareness of HLHS, and give other the opportunity to live life as Emmy did. We look forward to seeing her on race day cheering us on!
Twenty-Two weeks into her pregnancy, Jaelani’s mother Latoya learned that her little baby was going to be born with HLHS (Hypoplastic left Heart Syndrome); news no mother wants to hear. Seventeen weeks later, on August 16, 2013, Little Jaelani was born via caesarian section only to have her first open heart surgery 10 days later.
The first procedure was to re-route the blood flow around her heart, to allow her to live and gather strength for her next procedure. Infants with HLHS are not born with a functioning left ventricle, which typically does the job of pumping oxygenated blood to the body after returning from the lungs. The BT shunt that she received bypassed the left ventricle depositing the oxygenated blood directly into her aorta allowing the right ventricle to do the work for the whole heart.
Although Jaelani was very sick after her first procedure, she was released on October 30, 2013 and did very well. She grew and thrived even though she had many appointments and multiple medications that helped her survived. At only 4 months old, she went through another procedure called “The Glen” and did so well, she was released after only 4 days.
In 2015, she was received her 3rd and final repair, “The Fontan Procedure”. Everything that could go wrong did… Her coronary artery become occluded and stopped all blood flow to her vital organs. Little Jaelani went into cardiac arrest and had to be put on life support (extracorporeal membrane oxygenation) to keep her alive. Jaelani was so sick that her mother had to do the unthinkable and start planning her funeral.
On a Saturday morning, Latoya received a call from Dr. Emani’s office informing her that they wanted to do a mitochondrial transfer into her Jaelani’s heart. She put faith once again in the team at Children’s and made the hardest decision of her life; to move forward with the procedure.
After 8 long days in the ICU, the lines on the monitor grew larger as Jaelani’s heart grew stronger. On day 13, Latoya heard some amazing news. The Nurses wanted to turn off her sedative. Latoya’s princess finally opened her eyes, and melted her mother’s heart with one word. “Mommy?”
Things continued to get better.
Finally, on November 7, 2015 after months in the hospital, they were ready to go home. They knew that Jaelani had a long road ahead with recovery, but she showed her family that she was ready to fight harder than ever before.
Jaelani is getting stronger by the day and doing all the things that a normal 3-year-old would do by going to school, and living life to the fullest. They continue to work with the cardiac team lead by Dr. Blume and keep their faith by praying for little Jaelani’s good health.