A Belated Vent

WARNING .... this is a vent

Today is about something that has been gnawing at me for more than one year. Something that came to the forefront today once again.

I was speaking with two heart mom friends, both of whom's children were operated at the same hospital as Drew and of one whom's child sees the same Cardiologist as Drew. We were discussing what type of information we were given on CHD on a support page on FB. I posted first...

Nothing.

That's right, I wasn't given a thing.

I was told to go on two different sites and research "pulmonary stenosis;" which, by the way, might as well have been in a foreign language for all the sense it meant to me. Drew was 6 weeks old, this was thrown in our lap and I was in the middle of PPD.

When I found out some parents in our same group of Doctors ARE given this information, it pissed me off.

Let me be clear, I am not mad at the parents. I am mad at the "establishment."

Why weren't WE given this information?! Why aren't ALL parents given this information?!

It's not necessarily the Doctors fault, not really anyway. Initially, not much thought was given to his CHD, to be honest. We were told he would more than likely live with it for the remainder of his life and would need to be monitored. We were given the "worst case scenario" as being the balloon valvuloplasty and that was a huge what if, and nowhere near being a certainty. One month later, his PS was worse and the valvuloplasty seemed likely. Four months later, it was even worse, and they discovered it was in his main pulmonary artery as well as his valve. It was now likely he would need surgery. All along, no information was given to us.

I am sure that at some point one Dr thought the other would share it with me, and when we arrived at CHM, I am sure they all thought another Dr had shared it with me. It wasn't until his pre-cath appt, when we received a diagram done in the clinic, that I could actually see in person (and not on a screen) what they were talking about. And after I saw it on the actual cath, it made more sense. But this was nearly 9 months into his life. WHY did it take THAT long for them to GIVE me this information??

Why did we have to deal with a Pediatrician who made comments like "I have patients with actual CHDs..."?

Why weren't we given the same courtesy extended to other families? Was his CHD not deemed serious enough? From the way everyone behaved about it, even when we were slammed time and time again with his worsening condition, you would've thought he was getting tubes in his ears, not open heart surgery. I thought they were so relaxed about it because they see it everyday. Now, I really believe what I always suspected...

That no one thought Drew was sick enough to warrant this courtesy. And maybe he wasn't as sick as other babies...no, not maybe, DEFINITELY. He wasn't. That's just the truth. We were extremely blessed and fortunate, still are, but his heart was still broken. It needed to be repaired. His poor right ventricle was working overtime to get blood to his lungs and was showing signs of wear and tear. He wasn't progressing in gross motor development due to fatigue. But, he was chubby and happy, and that's all people saw. And we kind of went along with this, because we didn't know we had another choice.

Well, that stops here. I am using this as my friend, Melonie suggested I use it ...

So help me God, all CHD parents will be given proper, accurate and non-scary information about their child's defect(s) upon diagnosis. They will be given access to support groups for themselves and support for their children. Expectant families will be given information from and access to other expectant families. Pediatricians will be educated by the literature we leave in their offices; parents as well. CHD will not hide in the shadows any longer. And most importantly, NO ONE who wants the information will be left in the dark wondering (and scared to death mind you) about their child's future. No parent will HAVE to seek out this information on their own, they will be given it at their appointments, and will only choose to give it online if they want to do so. And no parent will have to seek out support on their own, they will know where to find it...and it will come to them, if they so choose.

I don't want another scared and overwhelmed family to go through what we did. Not if I can help it.