Saving Little Hearts

Young family heart story written by heart mom Kim Young.

On July 12^th, 2003 we were introduced to the world of Congenital Heart Defects (CHD). Andrew was born a healthy 7lbs, ‘normal’ pregnancy, and uneventful delivery. However, 8 hrs after birth a heart murmur was detected by the pediatrician. Immediately, an echocardiogram was ordered. My husband could tell by the look on the Radiologist’s face that the results were a far cry from ideal. Andrew was diagnosed with the following 5 heart defects:

1. Hypoplastic Right Ventricle (HRHS) – this means the right ventricle of Andrew’s heart is not developed, so his left ventricle does twice the work for pumping blood into his lungs and body
2. Transposition of the Great Arteries (TGA) – Andrew’s great arteries (pulmonary and aorta) were reversed. Normally, the pulmonary artery carries blue blood from the right ventricle to the lungs to get re-oxygenated. Then the aorta artery carries the re-oxygenated red blood from the left ventricle to the body. Andrew’s aorta was connected to the right ventricle so that blue blood was carried back to the body. Hence, Andrew’s fingernails are blue at birth. Andrew’s pulmonary artery was attached to the left ventricle so that red blood is carried back to the lungs.
3. Coarctation of the Aorta (COA) - the aorta artery extends out of the heart and arches over and down through the body. Andrew’s archway was severely constricted. This defect obstructs the blood flow from the heart to the rest of the body forcing the one and only ventricle to work even harder. This leads to increased blood pressure due to the increased pressure to get the blood through the constricted artery.
4. Ventricular Septal Defect (VSD)– there is a small opening between the left and right ventricles of Andrew’s heart. An adequate amount of oxygen-rich (red) blood from the heart’s left side is forced through the defect to the right side. Then the blood is pumped to the body through the transposed aorta artery. This allows Andrew’s body to get a combination of red and blue blood (mixed blood); however, this is inefficient and overworks the heart which may cause enlargement
5. Double-inlet Left Ventricle (DILV)– Andrew’s left ventricle has 2 openings instead of one. This is not life-threatening considering Andrew’s special heart.

The first 3 defects were life-threatening without immediate surgery. Andrew would endure a series of surgeries from now until age 3 years to address the first defect (HRHS). At age 4 days old, Andrew endures his first 6 hour open heart surgery to address HRHS, TGA, and COA. The first 48 hours are critical for recovery at this young age. Unfortunately, 36 hours after surgery Andrew must endure another open heart surgery due to complications from correcting the Coarctated Aorta. Miraculously, Andrew recovers quickly after enduring these 2 surgeries back to back.

We brought Andrew home from the hospital 2 weeks after birth. He had a feeding tube down his nose into his stomach due to his heart’s ability to endure only half of his necessary nutrition. So, we learned how to feed him through this feeding tube and administer numerous medications down ‘the tube’. Andrew slept a lot and would fall asleep during feedings due to his special heart. We constantly visited the cardiologist and pediatrician monitoring Andrew for signs of heart failure. He was ‘blue’ when he would cry and he got really upset when eating. So, it was a long 15 weeks waiting for Andrew’s next heart surgery. Weight gain is a constant struggle for most ‘heart babies’ due to the heart working twice as hard as a healthy heart. We weighed Andrew weekly, constantly monitored his food intake, and increased his calories as much as possible. Our 2 year old daughter learned to adjust quickly to a younger sibling with special needs.

At 4 months old, Andrew had his third open heart surgery which lasts seven hours. This surgery was the second phase for HRHS and the COA surgery was redone due to continued complications. Andrew went into this surgery looking very ‘blue’ and came out ‘pink’. He was so much happier at the end of his recovery! We continue struggling with feedings but

Andrew learned to eat on his own without the feeding tube. One risk of multiple surgeries on the aorta area is damage to Andrew’s left vocal cord. We learn at age 14 months that Andrew’s left vocal cord is in fact paralyzed.

Today, Andrew is almost 3 years old. He is very spirited and determined. He likes to do things on his own and is very analytical. Strangers who do not know Andrew’s history, are usually shocked to hear about his heart history.

Every child is affected SO differently by CHDs, but the family effect is similar considering the special medical needs of these ‘heart’ children. The genetic research alone is enough to emphasize the importance of knowing about CHD due to various CHDs within family trees. Knowledge is power and we need to know our own hearts and share as much information as possible with our families. Undetected heart defects can be fatal, so we must spread the word.