PH enquiry for parent

[Damien3981]

Hi There,

My 2.5 year old son has just been diagnosed with PH. At this point in time we are awaiting the call for the catheter to be inserted to check his pressures. My son also had a large VSD(10mm) repaired at 9 months of age. He was diagnosed at 7 months.

My question is would this VSD be the cause for my son now having PH? Also would there be any chance that we have got onto this PH in the early stages or has the damage already been done? So very concerned at the moment.

Thanks in advance

[Jonathan D. Rich, MD]

Thanks for the update.  If your son does end up having PH, the RHC will be helpful at determining its severity, and may help determine which treatments he may respond best to. And if he does have PH, it is absolutely essential that a "PH specialist" be the one that takes care of him to be certain that he gets the treatment that he needs. Remember, not all PH is created equally---and the internet can be very scary but the internet has not been trained in PH (and neither have the vast majority of cardiologists or pulmonologists).

Please let me know if I can be of any further help.
I am keeping your family in my thoughts.

Best,

Dr. Rich

[Damien3981]

Hi Dr Rich,

We have just met up with a another cardiologist(who our original cardiologist referred us to). He is the one performing the RHC in about a weeks time. After a brief meeting with him and after listening to my son's heart beat and also feeling it, he is pretty certain my son has PH. He was quite up front with us and told us that after looking at his Eco and ECG results there does seem to be some "abnormally high pressures". Hoping for some sort of miracle now once the RHC is performed

[Jonathan D. Rich, MD]

Hi. I dont think you were "wasting time" in terms of any emergency to your son. However, I do think that waiting 5 weeks for something like this (ie quite frightening to you as a parent) sounds a little long.

In the meantime, I hope all is going ok and that the evaluating is progressing. Please feel free to keep me posted.

Best,

Dr. RIch

[Damien3981]

Thank you so much for your reply and kind words Dr Rich.

My son is not showing any symptoms like being short of breath or swelling. He has the odd bloated tummy but the last few days(maybe because we have been googling too much) we have found him to be sitting on the lounge a bit more then usual. As he is 2.5 he can't tell us exactly.

Basically the way we found what we think is PH is due to the fact I could really feel my son's heart pounding through 2 or 3 layers of clothes. That's what got the alarm bells ringing. We then called our cardiologist for a checkup and the earliest he could get us in was  5 weeks. The cardiologist gave my son an ECO and ECG and all he told us was that there was pressure on the right side if his heart. To what extent we don't know? We have now been told it could be 2-3 weeks for the heart cath. As parents this is really frustrating considering we knew something was wrong for some months now.

Dr Rich do you think the hospital are wasting valuable time right now?

[Jonathan D. Rich, MD]

Hello and welcome to the forum.

I am so sorry to hear of what you are going through with your son. As a parent myself, I can understand the angst and the worry that you are feeling.

As an adult cardiologist and pulmonary hypertension specialist, I take caution when commenting on pediatric issues.  Having said that, let me just make a few brief comments:

1. The fact that your son has not had a cardiac catheterization yet tells me that we cant let the cart get ahead of the horse here.  Lets first see if he does indeed have PH and if he does, lets determine the cause, its severity, etc etc.  There are so many varieties of PH and the management approach differs greatly depending on the type of PH.

2. I think there would be a fairly high likelihood that the PH is related to the VSD.

3. How was his PH diagnosed?  Is he symptomatic? (ie is he breathless, not growing, etc or was this an incidental finding on a routine follow up echo?)

4. Early diagnosis is definitely a good thing! (and remember, first need to do the heart cath, etc).

5. Take a couple of deep breaths and try to hang in there.  

Having you and your son in mind.

Best,

Dr. Rich