After undergoing in vitro fertilization (IVF), Kaitlin and her husband, Will, learned through genetic testing that the embryo doctors transferred had trisomy 1, a condition in which an extra copy of a chromosome is present in the cell nuclei usually resulting in a miscarriage. However, after getting positive test results from an amniocentesis later on in Kaitlin’s first trimester, their unborn daughter, whom they later named Kennedy, continued to develop and was doing fine.
“All of the doctors, genetic counselors and high-risk folks said this wasn’t supposed to happen, but it did happen, so we were going to see if this was in God’s plan,” said Will.
Things changed during Kaitlin’s 20-week appointment when the doctor discovered that Kennedy had multiple heart defects—pulmonary atresia, ventricular septal defect, double outlet right ventricle and a right aortic arch. Kaitlin and Will were referred to Children’s Healthcare of Atlanta Sibley Heart Center.
As soon as Kaitlin delivered Kennedy, the newborn was taken to Sibley Heart Center for the first of four cardiac catheterizations performed by Christopher J. Petit, MD, Pediatric Cardiologist at Children’s, within the first six months of her life. Three were completed prior to Kennedy undergoing open heart surgery to form a heart valve.
The surgery, which was performed by E. Dean McKenzie, MD, Chief of Cardiothoracic Surgery at Children’s, took about 12 hours. “During that time, we were getting updates regularly from the OR,” Will said. “They did a good job of communicating with us. The cool thing for us was that because of Kennedy’s cath procedures, we knew a lot of people in the Cardiac Intensive Care Unit (CICU), as well as in the stepdown unit. It felt, to some degree, like home.”
Kennedy was in the hospital for about six days before being discharged, and Kaitlin said it took about three weeks for her daughter to get back to her normal self. “It was remarkable to see how resilient she was,” Kaitlin said. “Her sats are at 100, which we’ve never seen before, and developmentally she’s on track. She’s the happiest little girl.”
The next step for Kennedy, who is now 8 months old, will be a second open heart surgery to replace the new valve, which is typically done during school age. Will said the one they put in will not grow, so as his daughter gets older and her body needs more volume to go from the valve to the lungs to oxygenate more blood, it will need to be replaced. Doctors continually monitor her to determine when that will be.
“We wished we didn’t have to go to the hospital, but I wouldn’t want to be anywhere else besides Children’s,” Kaitlin said. “From the smiles to the handshakes and hugs, anything they’ve given has just been wonderful and so reassuring that everything is going to be OK.”