Four months pregnant with her second child, Nykia Ward walked into her doctor’s office eager to learn the sex of her baby during her appointment that day. After the joy of discovering she was carrying a girl that she would name Kaycee, the doctor presented her with some concerning information.
A bright spot appeared on Kaycee’s heart during the ultrasound. Told it was probably a non-issue, Nykia returned two weeks later for another look.
At the next visit, tests revealed the bright spot was actually a hole in Kaycee’s heart. The doctor felt confident that the hole would close on its own before the birth. To be certain, Nykia went to a fetal cardiologist for genetic testing.
From the genetic testing, the doctors discovered the magnitude of Kaycee’s condition. Kaycee had multi-complex congenital heart defects, a rare defect comprised of several congenital heart defects (CHD), creating multiple large holes in her heart. One of these defects was ventricular septal defect (VSD), a hole between the two lower chambers of the heart.
Out of Kaycee’s heart defects, the most serious and lethal if not treated, was her complex coarctation of the aorta. This meant her aorta, the major artery, was too narrow for blood to flow through and get pumped to the lower half of her body.
From this point forward, Nykia was in and out of appointments and constantly having to digest new information and concerns. “At every checkup there was something new with her heart,” Nykia said.
At seven months pregnant, Nykia met with the chief cardiac surgeon that would perform Kaycee’s surgery. They planned a scheduled delivery and the steps that would follow. With the knowledge of Kaycee’s condition, the doctors knew Kaycee would need to have open-heart surgery as soon as possible in order to ensure proper blood flow to keep her alive.
With the delivery and surgery plans in place, Nykia gave birth to Kaycee on September 25th, 2014. After only 10 minutes with her child, Kaycee was taken to the intensive care unit (ICU) where she was monitored leading up to her open-heart surgery.
At only four days old, Kaycee underwent her surgery and Nykia endured the long, difficult wait to hear how the operation went. “I can’t put that feeling into words. I was just trying to read the nurses’ facial expressions to know how she was doing,” Nykia said, describing the wait.
Finally, the surgery finished and Nykia could see her daughter. “It was jarring to see her so swollen.”
While reunited with Kaycee and joyous over the completed surgery, Nykia also learned about some complications that occurred during the operation. During the surgery, Kaycee experienced heart block and a pacemaker was inserted to help regulate her heart beat. The surgeon also inserted an emergency peripherally inserted central catheter (PICC) to administer IVs and medications to Kaycee.
During open-heart surgery, it is common for other areas of the body to be affected or harmed. In Kaycee’s case, the recurrent laryngeal nerve (RLN) in her chest, which is connected to the vocal cords, was damaged causing vocal cord paralysis. Because of this, Kaycee was unable to cry, swallow, or suck, and had to have a NG feeding tube inserted from her nose to her stomach.
Expecting recovery to take 14 days as the doctors predicted, Nykia found herself moving into the hospital to stay with Kaycee as post-surgery complications kept occurring. When Kaycee’s pacemaker was removed, her heart rate reached 250 beats per minute. She was placed on medications for Junctional Ectopic Tachycardia, a rare syndrome that can occur while recovering from heart surgery.
Kaycee’s PICC line was also causing her stomach issues, and she had gastroesophageal reflux disease (GERD) which put her at a high risk of aspirating. At only 35 days old, Kaycee was back in surgery to remove the feeding tube and PICC line. They also inserted a MIC-KEY button, which replaced the feeding tube as Kaycee’s new feeding method.
Fifteen days after the successful surgery, and after 50 days spent in the hospital, Nykia and Kaycee were able to move back home.
Kaycee had a full-time nurse and was in physical therapy for a year and in operational therapy for six months to manage her unique health needs. She was delayed in crawling and had to learn skills most people take for granted such as sucking and swallowing.
Today, Kaycee is three years old and is running, jumping, and experiencing life with no restrictions. She is in food therapy once a week and operational therapy to work on her fine motor skills to prepare to enter school.
“My daughter is a miracle. It was definitely a hard time and difficult pregnancy, but God gave peace and brought us through many days of uncertainty! My daughter is a fighter and a survivor,” Nykia exclaimed.
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