LEXINGTON, Ky. (February 12, 2021) – “She was still very small, but not really small.” We never thought about having her tested for anything. We just assumed she was healthy. All the doctors said she was in good health.
When Richmond’s Madison McDaniel looks back on the birth of her daughter Jaidyn in May 2019, there is no sign that anything was wrong. Jaidyn had measured a little moment in utero, but doctors assumed it was because of a problem with Madison’s placenta. They induced her and Jaidyn was born three weeks earlier. But soon after she was born, Madison knew something was wrong.
âI noticed that her hands and feet remained sort of blue and that she had difficulty breathing, and that she choked whenever she breastfeed,â Madison said. She told her local pediatrician, who assured her that everything was normal and that Jaidyn was in perfect health.
Unconvinced, Madison took Jaidyn to another pediatrician who detected a heart murmur. Jaidyn was then referred to Dr Joshua Hayman, pediatric cardiologist at Pediatric Joint Heart Program To Kentucky Children’s Hospital.
Jaidyn was diagnosed with Shone Complex, a rare congenital heart disease that includes a number of distinct heart defects. Jaidyn had aortic stenosis, a narrowing of the aortic valve; mitral valve stenosis, narrowing of the mitral valve; atrial and ventricular septal defects, or holes in the walls of the heart chambers; and an interrupted aortic arch, which is the rupture of the semicircular curve of the aorta.
âHer heart was overloaded; she was on the verge of heart failure, âMadison said. “She was in a very delicate and vulnerable condition.”
At three months, Jaidyn underwent his first heart operation to repair the interrupted aortic arch. The aorta is the heart’s main blood vessel that carries blood to the rest of the body. A healthy aorta is semicircular in shape, but Jaidyn’s was too narrow. The oxygen-rich blood was not flowing normally to other parts of his body. KCH surgeons removed the narrow section and joined the two healthy ends of the aorta. If left untreated, Jaidyn would have sustained significant damage to her organs and extremities.
Prior to Jaidyn’s birth, Madison’s obstetrician had difficulty getting a clear ultrasound due to the position of Madison’s placenta. It took three ultrasounds to see all four chambers of Jaidyn’s heart. But even with a clear picture, the Shone complex is not easy to detect before birth. In fetuses, there is not much blood flow to the left side of the heart. This is because pre-birth circulation passes through a temporary blood vessel called the ductus arteriosus which closes soon after birth. It is only then that the traffic problems start to appear.
In September 2020, Jaidyn underwent her second open heart surgery, this time to remove a subaortic membrane that had grown in her left ventricle and was blocking her aorta. The operation went well and Jaidyn spent four days recovering at KCH.
At home, she’s a normal, energetic and exuberant toddler.
âShe’s wild,â Madison said. âShe’s everywhere all the time. She has a lot of energy.
But Jaidyn has to be careful. Even at two years old, she knows how to pace herself when she plays.
âIf we’re playing and I hug her and feel her heart is pounding really hard, she’ll have to take a break,â Madison said.
Going forward, Jaidyn will have a lifetime of restrictions. She will not be able to play sports, but there are other activities that she can do and be like other children. A third open heart operation is in her future, as the membrane of her heart has already started to grow back.
But Jaidyn’s family are upbeat and have confidence that Jaidyn is in good hands.
âI’ve seen her conquer two open heart surgeries before,â Madison said. âThis next one seems like a piece of cake. I can’t say enough good things about Dr Backer, his nurses, Dr Hayman and the staff there. Honestly, they were such a breath of fresh air in such uncertain times for us. “