Every year, 100,000 babies don't make it to their first birthday because of CHD.
CHD, congenital heart disease

Meet Sloan Elise Rieke, your Heart Warrior of the Week! Sloan came into the world on February 28th, 2017; doctors quickly picked up a heart murmur and decided to monitor it closely even though it wasn’t much of a concern initially (note: it is not uncommon for newborn babies to have heart murmurs, most of which go away on their own in a few days’ time). The murmur persisted at one-week old, so the family’s pediatrician sent for an echocardiogram. At two weeks old, doctors informed Sloan’s parents that she had Tetralogy of Fallot and would need open-heart surgery anytime between that day and six months of age.

Sloan underwent open-heart surgery this past summer at four months old in which doctor’s performed a total “repair” for her Tetralogy of Fallot which included closing a large hole in her heart and widening/patching the pulmonary valve. Doctors found that the pulmonary valve did not accept the repair, it is not functioning properly at this time and will need to be replaced in Sloan’s late childhood or early teen years as a result.

Miraculously, this little Heart Warrior has only spent about one week in the hospital throughout her journey with CHD, is on zero medications as of right now, and faces no restrictions (which her parents hope will stay that way as she continues to grow)!

Sloan’s Mom, Summer, describes her baby girl as strong beautiful and smart. This is their CHD journey in her own words:

Sloan is the youngest of four, so keeping her healthy – especially with siblings in school – is a challenge and worry for us. We do our best to make sure we keep the germs away. She [Sloan] is so inspiring to me, especially being so young and going through so much at such a tender age.  She is truly inspiring and really is my hero!  Sloan is such a happy baby with a huge personality, it just warms my heart to watch her grow and meet new milestones. I am so grateful for Children’s Hospital and all of the talented doctors and nurses who took care of our girl. We are also so grateful for groups like Save the Heartbeat who do so much to bring awareness to CHD! Sloan is true warrior and we are so blessed she is part of our family!

 

About Sloan's Diagnosis

Anatomy: TOF is actually four heart defects in one, they include – ventricular septal defect (VSD), pulmonary stenosis, right ventricular hypertrophy, and an overriding aorta.

Ventricular Septal Defect (VSD)
The heart has an inner wall that separates the two chambers on its left side (left atrium & left ventricle) from the two chambers on its right side (right atrium and right ventricle). A VSD is a hole in the septum between the heart’s ventricles that allows oxygen-rich blood from the left ventricle to mix with oxygen-depleted blood from the right ventricle.

Pulmonary Stenosis
This defect involves the narrowing of the pulmonary valve, creating an obstruction when blood tries to flow from the right ventricle to the pulmonary artery to receive oxygen from the lungs. With pulmonary stenosis, the pulmonary valve cannot fully open.  Thus, the heart must work harder to pump blood through the valve.  As a result, not enough blood reaches the lungs.

Right Ventricular Hypertrophy
With this defect, the muscle wall of the right ventricle becomes enlarged due to underlying causes that put added stress on this part of the heart. 

Overriding Aorta
This defect occurs when the aorta, the main artery that carries oxygen-rich blood from the heart to the body, is displaced between the ventricles and directly over the VSD.

Complications: With Tetralogy of Fallot, not enough blood is able to reach the lungs to get oxygen, and oxygen-poor blood flows to the body, resulting in dangerously low oxygen saturations. Pulmonary stenosis puts additional strain on the heart, resulting in it overworking itself.

Symptoms: A bluish coloration of the skin (cyanosis), shortness of breath, rapid breathing especially during feeding or exercise, fainting, poor weight gain, tiring easily during play or exercise, heart murmurs and tet spells (sudden development of deep blue skin, nails and lips after crying, feeding, or when agitated).

Treatment: Tetralogy of Fallot is repaired with open-heart surgery to repair all four defects. Additional surgeries throughout adolescence and adulthood are common to repair or replace the pulmonary valve.

Prevalence: This is one of the more common CHD’s occurring in ~5 out of 10,000 live births.

**Some babies born with TOF have additional heart defects, like pulmonary atresia.  With this defect, the pulmonary valve doesn't form correctly.  Instead of opening and closing to allow blood to travel from the heart to the lungs, a solid sheet of tissue forms. Because of this, blood can't travel by its normal route to pick up oxygen from the lungs.  In some cases, small amounts of blood are able to travel to the lungs through other natural passages within the heart and its arteries.

Leave a comment