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The Heart of Down Syndrome

Posted Jan 27 2009 6:27pm

40 to 50% of children with Down syndrome are born with a congenital heart defect. Most have what is known as an endo-cardial cushion defect, or Atrialventricual Canal Defect. Some kids get Tetralogy of Fallot. Others get either a Ventricular Septal or Atrial Septal Defect. And we can't forget mitral valve leakage or Transposition of the Great Arteries.

No, I'm not a cardiologist. But I should be.

Aiden was born with the AV Canal. He was also born with Tetralogy of Fallot and a leaky mitral valve and a narrowing triscupid valve. Aiden also has hypo-plasia of the right ventricle (underdevelopment of a cardiovascular structure, either a pumping chamber, valve or large blood vessel). Prenatal testing showed Transposition of the Great Arteries. Aiden's heart makes his doctors scared and usually leaves them scratching their heads in amazement.

At 5 1/2 months Aiden underwent open heart surgery to correct some of his heart defects. We went in knowing about the AV Canal. The day before surgery, we found out about the ToF. During the heart surgery, the hypo-plasia was discovered. During surgery, the AV Canal and the ToF were repaired. Kids with Down syndrome don't like the surgery to fix the hypo-plasia. 1 in 4 survive. I didn't want to risk it and neither did his surgeons.

What started out as a simple 3 hour surgery lasted 8 hours. After being on heart/lung bypass 3 different times, Aiden's heart liked the rest. Too much. And it didn't want to start working on it's own again. Aiden went to PICU on a portable bypass machine, called ECMO and a ventilator. These are machines that kept my child alive, doing the functions that he would normally do on his own. Machines that get you two nurses in your room 24/7 and they don't leave. Nurses that you will never forget their names for as long as you live.

The leaky mitral valve is still there also. We're waiting on that surgery for when Aiden is BIGGER (raising my arms in the air bigger)!! Hopefully much bigger.

Due to Aiden's heart surgery (one of the holes was right next to the "electrical system), Aiden also has atrial tachycardia. A normal heartrate is 80 - 90 beats per minute. Aiden's will shoot up, umm say 250 beats per minute. 150 bpm makes a cardiologist freak out. I'm surprised Aiden's cardiologists haven't died yet from a heart attack. Dr. Secondary Cardiologist put Aiden on an anti-arrhythmia medication. However it worked too well. Aiden's heart rate will drop down to like oh, 15 bpm and would have "pauses" for like 7 seconds at a time. We're on a new medication now.

Also, Aiden received chylothorax ( a tear in the thoracic duct) causing fat from formula to be dumped into his chest cavity. This little stunt landed Aiden in the hospital for another procedure to close the hole and re-inflate his right lung. He was then put on Portagen for a formula. I'll be the first to admit that formula isn't the best smelling stuff, but Portagen has a rotten smell to it. I don't know how he choked it down. I gagged everytime I made it. Now Aiden is on Pediasure, which smells a lot like a vanilla milk shake.

Aiden's heart has helped us to meet other families. Some with Down syndrome others without Down syndrome, but with heart issues. In February, we joined Mended Little Hearts of Tulsa, a support group for families of children with heart defects. We have 3 families in our group who have Down syndrome and heart defects.

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