May 15, 2012

Medical Drama, Now In Pint-Size Form

Now that Miss A is here, I was hoping we would become normal people who only go to the doctor for well exams and the occasional cold or allergy flare up.

Um, yeah, that's not going to happen.

I need to accept the fact that we're just not normal people when it comes to medical stuff. Because Miss A is less than 2 months old, and she already has not 1, but 2 cardiologists.

We knew that any child we have would need a cardiologist since there's a 50/50 chance of inheriting the Brugada Syndrome that R and his dad have. So far, her EKGs have been normal. However, that doesn't mean she's in the clear - a normal EKG doesn't necessarily mean she doesn't have it, it may just mean that it's not showing up yet. We're in the process of doing some genetic testing, but it will be 3 or 4 months before we have any information on that front. It's also possible the testing may not give us any information about her status, in which case she will need EKGs on a regular basis (I think every 6 months to begin with) throughout her life.

All of that is being handled by a cardiologist who specializes in issues with the electrical system of the heart.

When she was born, a heart murmur was also detected. At first she had two issues: a PDA and pulmonary valve stenosis. The PDA is basically a blood vessel in the heart that is supposed to close at birth or within a couple days after. Hers didn't close that quickly, but fortunately when she had a follow-up ultrasound of her heart on May 2, that showed that it had closed.

Unfortunately, it also showed that the pulmonary valve stenosis is still an issue. There are 3 flaps that are part of the valve, and her flaps are partially fused together, which means that they don't open as wide as they should, so the heart has to work harder to get the blood through there and to the lungs.

Right now it's not causing any symptoms, but if it progresses, eventually the heart wall will get thicker because of the extra exertion.

So a second cardiologist, one who specializes in structural issues of the heart, is managing that issue. Think of the first cardiologist as an electrician and this one as a plumber.

We have another ultrasound on May 22, and if that shows that the stenosis is getting worse, Miss A will have to have to undergo a cardiac cath lab procedure in which the doctor inserts a catheter in her groin, threads it up to her heart, and then uses a balloon to "tear" the flaps where they're joined together. It would take 2 to 3 hours, and it would require an overnight hospital stay.

There is a possibility that her stenosis won't progress and she won't have to have the procedure.

On the bright side, if you're going to have a stenosis issue, apparently this is the one to have, according to the cardiologist. Some cases of stenosis involve the diameter of the heart valve itself being too small, in which case they have to go in and make it bigger, which can involve actual surgery rather than just a procedure. So we're very thankful that is not the situation we are facing.

Still, they're talking about anesthesia. And an overnight hospital stay. For our barely-2-month-old. Who it took about 10 years for us to even have.

If she has to have the procedure, all I can say is that while someone is giving her the anesthesia, someone had also better be giving me valium. A lot of valium. Because me in a waiting room for 3 hours under those circumstances won't be pretty...


SLESE1014 said...

I'm so sorry you're going through this...hopefully everything will come back normal at the next ultrasound and your worries can go back to simple things like feeding and sleeping....

Keeping you and baby A in my thoughts and prayers..

MyTwoLines said...

Oh man. I'm glad the EKGs are normal at this point but hate that you have that constant worry. And I so hope she doesn't need the cath! I will be thinking about you guys...

Silver said...

Ewwww - no likey! Poor wee Miss A - and poor parents. Our wee one had a general at about 6 months and it was horrible for us - he seemed completely unphased by it, needless to say. You do just think that if it's taken so much time and heartache to have a child, you should get a free pass on stress - at least for a few years. Will be thinking of you all and hoping for good news. It sounds like she's very well looked after!

Libby said...

I agree with Silver - you deserve a peaceful life from here on out. I think I would need a valium right now! Hope Miss A's problems resolve on their own and you can just enjoy her.

Reese said...

Hoping and praying that Miss A's problems turn out to be self-resolving.