In January of 2022 while pregnant with twins Jenny had a routine anatomy scan. During that scan they found that the boy twin, Sawyer, appeared to have a heart defect and had soft markers for Down Syndrome. A fetal echocardiogram was then done, and it was determined that he had an atrioventricular canal defect or AVCD. An AVCD occurs when the valves and muscle walls that separate the heart's chambers do not form completely while a baby is still in the womb. Sawyer had a complete AVCD.

“A complete atrioventricular septal defect allows oxygenated blood that has come back from the lungs to the left atrium and ventricle to cross the atrial or ventricular septum. The blood then goes back out the pulmonary artery to the lungs.

This re-circulation of blood to the lungs, called a left-to-right shunt, doesn't work well. The left ventricle must pump already oxygenated blood back to the lungs. At the same time, the left ventricle is trying to meet the body's usual demand for its own oxygenated blood.

The amount of extra blood pumped by the left ventricle is often two to three times more than what is needed of a left ventricle in a normal heart.

Because there is a large hole in the ventricular septum, the high pressure normally created by the left ventricle to send blood throughout the body is also sent to the lungs.

Having a large left-to-right shunt, the higher workload on the left ventricle, and the high pulmonary artery pressure causes the lungs to be filled with blood. This causes fluid to leak from the bloodstream into the air spaces of the lungs. This condition is called pulmonary edema. Pulmonary edema makes it harder for a baby to move their lungs and breathe comfortably. The combination of increased heart and lung work uses large amounts of calories. This results in congestive heart failure (CHF).” -Cincinnati Children’s Hospital

The twins were born at the Mayo Clinic in Rochester, MN, at 34 weeks due to intrauterine growth restriction, or IUGR, and cord flow issues for both babies. Both spent time in the NICU after birth.

On August 10th Sawyer returned to the Mayo Clinic and had surgery to patch his heart and create valves to separate the chambers of his heart. After the surgery everything was as anticipated except for a small leak in his mitral valve. The day after his first surgery he began to show signs of lactic acidosis he also had high blood pressure and a high heart rate. They then found an additional leak on the other side of his heart. Saturday after his surgery they discovered milk in his chest tube and he was diagnosed with a Chyle leak. Fluid was leaking from his lymphatic system into his chest and he was not breaking down long chain fatty acids. On Sunday his leaks increased from moderate to moderate/severe. On Monday he started vomiting and his heart rate was elevated. They put his nasal cannula back in due to high respirations. An X-ray on Tuesday showed fluid in his lungs, an echo showed the mitral valve leak, and a leak in his ventricle. It was determined that he will need an additional surgery before he can go home.

Today Sawyer is having his second open heart surgery. He has not eaten for three days (by mouth or feeding tube) because he cannot tolerate feedings due to his heart working too hard. He has lost a lot of his pre-surgery weight.

You can follow updates on Caring Bridge at https://www.caringbridge.org/visit/sawyerbaldon

Please consider helping Sawyer Baldon, his parents Rick and Jenny, big brother Westen, and twin sister Charlotte (Charlie). They have medical expenses, expenses from being away from home at the Mayo Clinic, and limited ability to work currently.