Tuesday, February 21, 2012

Spencer's Heart

When Spencer was born, he had a patent ductus arteriosus (PDA). In laymen's terms, there is an artery that is supposed to close right after birth (or soon after that). Spencer's was still wide open after birth. This might be why he had trouble with oxygen desaturation. No one could hear the heart murmur sound of it by the time we left the hospital. The second echocardiogram he had in the NICU also couldn't find it.

The literature on babies with down syndrome as well as medical staff, including Spencer's pediatrician, recommend a follow up echocardiogram. He had his yesterday. We expected for him to get checked and then be told that his PDA had disappeared like it is supposed to do.

The waiting room has two built-in fish tanks designed after Finding Nemo. Sasha loved them! I took Spencer back for the ultrasound of his heart (echocardiogram). They had me strip him and lay him propped up on a pillow. He was hungry, so I gave him a bottle. Spencer ate and was perfectly still for the procedure! In fact, he usually chokes but did not choke once! I do hold him in an elevated position for feeding, but he still chokes. I may have to try this pillow business. He even chokes when he nurses!

Then the ultrasound technician took us to another, empty room. Another tech brought in an EKG machine. She stuck about a dozen electrodes all over his torso. He was a little wiggly and hungry, so I gave him his bottle. That got the tech moving fast, in order to take advantage of his stillness. The ultrasound technician didn't mind wiggles, but Spencer needed to be still for the EKG.

After a longer wait, we saw another nurse who checked Spencer's blood pressure from each arm and leg. One leg took 3 tries before it registered. We waited some more for the doctor, who asked some questions and poked around a bit and listened to Spencer's heart directly. Then he went away to watch Spencer's echocardiogram study... twice. He apologized for our long wait, which isn't normal for their office. He did say that the first appointment is generally pretty intensive, especially for a child with Down syndrome.

And finally, the results...

He had a print out with color images, which I really appreciated! No need to jot down the medical terminology myself, it was all there. The handout even includes some explanation, though the doctor explained some things, too.

Spencer's patent ductus arteriosus (PDA) is gone. This was all the news I was expecting today. I think I was actually even a bit cocky about it.

Spencer has pulmonary hypertension. This is something that we need to watch.

Spencer also has an atrial septal defect (ASD). This is an opening that we all have at birth, but it is supposed to close up, just like the artery that did. We will need to watch it, as it needs to close by the time he is 24 months. This is a pretty common thing and they usually close by then. This is also something we need to watch.

And lastly, Spencer has a bicuspid aortic valve. You have these 2 valves and each one is kind of split into 3 flaps. Spencer's is only split into 2. The concern is that the valve may narrow or a leak may develop. This can be a serious issue. We need to watch this valve closely.

Spencer will see the cardiologist again in 4 weeks. I don't know yet how regularly he will have to be seen, but we are reassured that the future appointments will not be so intensive or time consuming. The doctor recommended I plan to give Spencer a bottle for every echocardiogram because they can get a much better, clear reading faster when he is very still. They were very pleased with Spencer's behavior.

So... now to worry, but hopefully only a little.
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