Starting today for a week, Feb 7-14, is CHD Awareness Week.
CHD = Congenital Heart Disease
TGA = Transposition of Great Arteries
TGA is what took Ayden’s life. TGA is one of the many CHDs out there. To put it simply, in TGA the aorta & pulmonary artery that carry your blood are swapped or transposed and attached to the wrong ventricles. The oxygenated blood (red) doesn’t get mixed with the de-oxygenated blood (blue) & hence the body doesn’t get enough oxygen to survive. The aorta is connected to the right ventricle, and the pulmonary artery is connected to the left ventricle — the opposite of a normal heart’s anatomy.
There are different types of TGA. Ayden had dextro-TGA (d-TGA). He also had a VSD – Ventricular Septal Defect, which is basically a hole in the wall between the lower chambers. Though VSD is another CHD, this was a blessing in disguise because the hole allowed some amount of blood mixing, so we didn’t have to operate on him immediately. Some kids have ASD – Artrial Septal Defect – the hole in the upper chamber. Some kids have both. Some kids have other heart defects as well like Pulmonary Stenosis, Tricuspid Atresia, thinning of the aorta, etc.
What causes TGA?
The heart forms during the first 8 weeks of fetal development. The problem occurs in the middle of this time, allowing the aorta and pulmonary artery to become attached to the incorrect chambers.
Some CHDs may have a genetic link causing heart problems to occur more often in certain families. Most of the time this heart defect occurs by chance, with no clear reason for its development. In our case, it was just our bad luck.
What are the symptoms of TGA?
Most newborns with TGA have cyanosis (blueness of the skin) because of decreased oxygen levels in the blood. This is the most common indicator. In absence of cyanosis, you usually assume that everything is fine, and a lot of kids get sent home with no timely diagnosis. Ayden didn’t have blueish skin. Because he was pre-term, the neonatologist did a thorough check and noticed low oxygen saturation levels. Following that, he did a 2D echo on him, and that’s when we found out. He was 3 hours into life then.
Rapid breathing, rapid heart rate, clammy skin are the other symptoms.
TGA can be detected during pregnancy with a fetal echocardiogram. Not every doctor prescribes a fetal echo, especially if you are healthy & don’t have any triggering family history. I was in that category, so we didn’t have a fetal echo. Diagnosis before birth helps you prepared, research on the condition, decide on the hospital, talk to doctors… to name a few.
After birth, a 2D echo of the heart is your best bet. It can tell you most heart defects, including TGA, VSD, ASD, etc.
An open heart surgery has to be performed to manually switch the vessels and attach them to the right chambers. Usually, it’s a 4-5 hrs surgery. For Ayden it took 8 hrs owing to complications during the surgery.
The surgery is not foolproof. There could be complications during and after surgery. The kids could be put on pacemaker, dialysis, long time on ventilator – for weeks & months even. There are high chances of infection as the scar on the chest remains open for a few days at least to ensure easy access to heart in case of any complications after the surgery.
If the child has other heart defects, the kind of surgery needed will depend on how the heart can best be modified to cope with all the problems she or he has.
The pediatric heart surgeons that we had met in Hyderabad said the chances of survival if the surgery is done on time is 90%, but that comes down to 20% for a premature baby. Ayden belonged to that 80%.
Why am I saying all this?
Because 1) I lost my son to it, 2) there’s very little awareness on CHD, 3) CHD is the leading cause of birth-defect related death.
1 in 100 kids in the US are born with CHD every year. The reason I don’t have the numbers on India is because we don’t talk about it, there’s no awareness and hence no research.
CHD doesn’t get the attention & awareness that it deserves. I didn’t know about it until Ayden. Awareness leads to research. Research leads to funds. Funds lead to medical advancement of treatment. And that leads to many a tiny feet spared.
Sources of info:
1) Center for Disease Control & Prevention
2) American Heart Association
3) Children’s Hospital of Philadelphia
4) Leading pediatric cardio surgeons in Hyderabad
PS: TGA is the CHD that I know the best from experience. Hence, focusing just on that.