After a normal full-term pregnancy with no complications, Shenequa gave birth to Ayden via C-section in May 2017 in the island of St. Croix in the U.S. Virgin Islands. Shortly after, the baby's pediatrician detected a heart murmur, but with no pediatric cardiologist on the island, Ayden was airlifted to Nicklaus Children's Hospital. So began a long and challenging medical journey that lead to many surgeries for complex heart and brain disorders, and many anxious days for Ayden's family.
Yet by the time Ayden turned two in 2019, this remarkable little boy was running and playing with his cousins in St. Croix and meeting all of his developmental milestones. This is a tribute to Ayden's determined spirit and the excellent congenital heart surgeons and neurosurgeons and other clinical caregivers at Nicklaus Children's.
Soon after arriving at Nicklaus Children's in 2017, Ayden was diagnosed with tetralogy of Fallot (TOF), a rare condition caused by a combination of four heart defects present at birth. It is a life-threatening condition if not surgically corrected.
Due to her C-section, Shenequa had to remain in St. Croix, so Ayden was accompanied by his maternal grandmother, Janice, who kept Shenequa abreast of all the developments. Shenequa — who also has two daughters, ages 12 and 14 — arrived in Miami 14 days later and was finally able to hold Ayden in her arms. That emotional day just happened to be Mother's Day. They would remain in the hospital together for 72 days.
In late June, Ayden underwent a complete heart repair. After a few initial complications were resolved, he recovered well and was discharged from the hospital on July 14.
Every three months, Ayden would return to Miami to see a cardiologist and in October 2018 he was diagnosed with endocarditis, a rare inflammation of the heart valve that led him to require hospitalization. During the hospital stay, doctors found a rare and fatal brain aneurysm that also needed surgical repair, so then it became of question of which operation should come first — the brain or the heart. The team of cardiologists, neurologists and surgeons decided to do the brain operation first, so on October 23, Ayden underwent brain surgery with Dr. John Ragheb at Nicklaus Children's to remove the aneurysm and repair the artery.
The strong-spirited little boy surprised his doctors by walking fairly quickly after surgery, with his first post-surgical steps documented on November 3. On November 21 Ayden had his second open-heart surgery with Dr. Kristine Guleserian. His aortic valve was damaged beyond repair and had to be replaced. A day later, he was back in the operating room for his third open-heart surgery, due to a complete heart block requiring temporary pacer wires to be placed on his heart. Nevertheless, Ayden's recovery was quick and uneventful, and he was discharged from the hospital on December 20, which meant he would be back home for Christmas.
A month later, Ayden returned to Nicklaus Children's Hospital for an echocardiogram because he had a fever and elevated labs. “It was like a roller coaster ride,” recalls Shenequa. “I could not wait to get off.”
He was admitted to the hospital for a rare uncommon aspergillus infection. This was yet another life-threatening condition that required surgery, but Ayden defied the odds and came out of surgery in stable condition. Everyone was shocked, and very thankful to God for this miracle.
On February 18, 2019, Shenequa was told that Ayden would need yet another surgery. Doctors found an aneurysm in the boy's left leg, so they had to remove his left femoral artery and create a bypass to allow blood to flow to his leg. According to Shenequa, this surgical procedure has never been done on a toddler — only on adult patients — so she was understandably concerned. But, despite the risks involved, doctors believed this was the best option for him.
Four days later, Ayden had a successful femoral-popliteal bypass and was discharged from the hospital in April. Throughout all the surgeries and treatments, Shenequa says that the staff at Nicklaus Children's Hospital were exceptional. “They really go above and beyond to make the patient and family members comfortable,” she said. “Even though we were in the hospital for so long, at no time did I feel alone or uncomfortable. They excel in compassion and kindness.”
Although he has been through so much, Ayden has remained happy and playful the entire time. He particularly enjoys music and playing with his cousins.
Ayden continues to visit Miami for his regular check-ups, so as a community service project, the Ricardo Richards Elementary School's sixth grade class of 2019 helped raise funds for Ayden and his family's ongoing travel expenses.