In a healthy heart, blood that returns from the body to the right-side filling chamber (right atrium) is low in oxygen. This blood passes to the right-side pumping chamber (right ventricle), and then to the lungs to receive oxygen. The blood that has been enriched with oxygen returns to the left atrium, and then to the left ventricle. It's then pumped out to the body through the aorta, a large blood vessel that carries the blood to the smaller blood vessels in the body. The right and left filling chambers are separated by a thin shared wall, called the atrial septum.
Kailey’s heart has an opening in the wall (septum) between the atria (the two top chambers). [See picture above to see what Kailey's heart looks like.] As a result, some oxygenated blood from the left atrium flows through the hole in the septum into the right atrium, where it mixes with oxygen-poor blood and increases the total amount of blood that flows toward the lungs. The increased blood flow to the lungs creates a swishing sound, known as a heart murmur (or echo). It's not clear why, but ASDs are more common in girls than in boys (Luckily, Cohen does NOT have this!). ASD is caused when a problem occurs during the formation of the heart during the first few weeks after conception. In some cases, the tendency to develop an ASD might be genetic, which in Kailey’s case it is. Her father also had a heart murmur when he was born. Genetic syndromes can cause extra or missing pieces of chromosomes that can be associated with ASD.
The size of an ASD and its location in the heart will determine what kinds of symptoms a child experiences. Most kids who have ASD’s seem healthy and appear to have no symptoms. Generally, they feel well and grow and gain weight normally. They said that Kailey's defect is somewhere between the size of a BB and a marble, but closer to the BB size.
Children with larger, more severe ASDs, however, might have some of these signs or symptoms:
- poor appetite
- poor growth
- shortness of breath
- lung problems and infections, such as pneumonia
Lately, since turning one, Kailey has had a poor appetite, poor growth (at 20 months she is only 22lbs! So that means since she was 12 months, she has only gained 2 pounds. Cohen is at 20lbs and is 6 months old.), and fatigue. She gets really tired really quickly. When she wakes up in the morning, it’s only about an hour or two before she is ready to take a nap. She naps for 2-2.5 hours then wakes up. She will then stay up for maybe 4-5 hours then she is ready for bed. That’s only a total of maybe 7-7.5 wakeful hours a day… out of 24. In my personal opinion, that’s not good for an almost 2 year old. In general, kids with a small ASD won't require restrictions on physical activity- which, so far, Kailey has no restrictions…
Kailey’s murmur is small, so she simply needs to visit a pediatric cardiologist regularly to ensure that there are no problems. They say that often, small defects will close spontaneously without any treatment during the first years of life. Kailey’s doctors want to close her defect by the time that she is 3 years old. That’s just a little over a year away! They would do it by using a method called Cardiac Catheterization. Meaning that they would insert a thin, flexible tube called a catheter into a blood vessel in the leg that leads to the heart. A cardiologist will guide the tube into the heart to make measurements of blood flow, pressure, and oxygen levels in the heart chambers. A special implant will be positioned into the hole in the septum and will flatten against the septum on both sides to close and permanently seal the ASD.
We are hoping and PRAYING that we will not have to do either of these procedures. We hope that her heart will heal on its own- like her father’s did. We go tomorrow (well, I guess today) to the cardiologist to get an ultrasound of her heart to make sure that everything is okay. Hopefully we will see a change, and that it is getting smaller. So far it hasn’t decreased in size since they found it when she was 4 months old.
Hoping that tomorrow will go well!
P.s- Kailey went potty in her big girl potty on Monday! Which ironically was the same day she went to the dentist- and might I add, did very well! She got a balloon, a slinky, and a sticker! I'm so proud of my little girl. She's growing up too fast! But I'm thankful that the diaper period is almost over! haha.