PPHN - how long 'til the worry is over?

[momma_bear]

Does anyone have any experience with persistent pulmonary hypertension resulting from meconium aspiration? My DD was in NICU for 14 days with this during July and went off home oxygen at the end of August. I've received varying advice on how long I have to be really careful about colds and flu. I'm keeping my 4yo daughter home from preschool to avoid viruses and we're stuck in the house every day going CRAZY! (It's -27C today up here in Canada - can't go out!) I haven't vaccinated 'cause I'm scared of side-effects or long term effects.

Pediatrician says she should be OK for next cold/flu season (fall 2010)....anyone receive consistent advice and/or experience? Anyone have issues in the 2nd year?

[happyblessedmama]

My daughter had a diagnosis of severe PPHN after meconium aspiration, a 12 day stay in the NICU but did not require supplemental oxygen post discharge.

We were very careful (she was child #3, so 2 older siblings) with taking her out anywhere. We live in a very cold area so we even sheltered her from drastic temperature changes (covered carseat, etc). She once reacted poorly to exposure to cold air (properly dressed, of course!).

We haven't had any problems at year #2 or onwards (she is 5). If you are expecting long term damage, obviously that'd change things. We had an unsure prognosis, they "couldn't tell" if damage had been done permanently, but from our outcome I'm guessing it was not.

Any more Q's about it, shoot me a PM.

[Dulcie]

Hi,

my daughter stayed in the hospital with PPHN until mid of July 2009. The peds told us that her lungs would need a couple of months to regenerate, and that we should avoid any occasions for a cold or a flu during that process, and not hand her around. They said that after half a year without diseases involving the lungs, her lungs would be like 'reset', like nothing had happened.

We are very careful with her, and mostly isolated her (except close family) during the first months. Now (6.5 months old) she meets more people, we also take her with us to the stores, but yet I would never have her handed around.

[momma_bear]

Originally Posted by Dulcie

Hi,

my daughter stayed in the hospital with PPHN until mid of July 2009. The peds told us that her lungs would need a couple of months to regenerate, and that we should avoid any occasions for a cold or a flu during that process, and not hand her around. They said that after half a year without diseases involving the lungs, her lungs would be like 'reset', like nothing had happened.

We are very careful with her, and mostly isolated her (except close family) during the first months. Now (6.5 months old) she meets more people, we also take her with us to the stores, but yet I would never have her handed around.

Mine is 6mo now and we've avoided all viruses so far (fingers crossed). Ped told us to keep our preschooler home 'til June though. She has qualified for synagis - that has relieved my fear of RSV but there's still flus, parainfluenza, etc. Did you get the flu shot? My ped said that her lungs would be OK by now but resp infection could cause the PPHN to recurr....were you told that?

[Dulcie]

Originally Posted by momma_bear

Mine is 6mo now and we've avoided all viruses so far (fingers crossed). Ped told us to keep our preschooler home 'til June though. She has qualified for synagis - that has relieved my fear of RSV but there's still flus, parainfluenza, etc. Did you get the flu shot? My ped said that her lungs would be OK by now but resp infection could cause the PPHN to recurr....were you told that?

I wish you all the best for further avoiding all the viruses. Keeping your other child home is surely a good idea. Peds told us to especially avoid contact with kids.

I have to admit that I never heard of RSV before After looking it up, I guess the immunization with Synagis is for preemies in the first place? (my daughter was post-term in the 42th week) Good that you know that you could get it if want to. Is RSV something that is widely spread?

Your lines about a recurrance of PPHN frightened me... never had heard of this. They had told us, that PPHN could only occur within the first 2 days after birth... after that point of time, the lung respiration is irreversible. My daughter was born with an undiscovered pneumonia, about 5 h after birth they noticed signs of PPHN, until then she seemed normal. And they had told us that if the pneumonia would have had occured on the 3rd day after birth, there would have been no 'switching' from lung respiration to fetal circulation possible, and therefore only little of the problems that we had to go through.

Did peds told you how PPHN could still occur now?

About flu vaccination: my husband and me got it (swine flu and flu) for not infecting her, but she didn't get vaccinated.

[momma_bear]

Originally Posted by Dulcie

I wish you all the best for further avoiding all the viruses. Keeping your other child home is surely a good idea. Peds told us to especially avoid contact with kids.

I have to admit that I never heard of RSV before After looking it up, I guess the immunization with Synagis is for preemies in the first place? (my daughter was post-term in the 42th week) Good that you know that you could get it if want to. Is RSV something that is widely spread?

Your lines about a recurrance of PPHN frightened me... never had heard of this. They had told us, that PPHN could only occur within the first 2 days after birth... after that point of time, the lung respiration is irreversible. My daughter was born with an undiscovered pneumonia, about 5 h after birth they noticed signs of PPHN, until then she seemed normal. And they had told us that if the pneumonia would have had occured on the 3rd day after birth, there would have been no 'switching' from lung respiration to fetal circulation possible, and therefore only little of the problems that we had to go through.

Did peds told you how PPHN could still occur now?

About flu vaccination: my husband and me got it (swine flu and flu) for not infecting her, but she didn't get vaccinated.

The synagis shot is most often given to premies but also to babies with chronic lung disease or heart disease. My baby was born at 40 wks+ 4days so she was full-term. RSV is VERY common. 90% of babies have had it at least once by age 2 (60%+ by age 1) - it presents as a common cold in most (runny nose, sore throat) but can become lower resp tract infection for anyone more prone. Problem with RSV is that most people aren't careful with colds (e.g. who stays home from work with a runny nose?! no one!) and it can be spread very easily and lives on surfaces for a long time. Synagis shots are expensive though so they only offer them to high-risk babies. My LO qualified because she was on home oxygen within 6mo of the start of RSV season (which is Dec-May here where I live).

Re PPHN recurrance - this was news to me too since the neonatologists in the NICU told me she wouldn't have a recurrance. But my ped said hypoxemia (sp? - low O2 levels I believe) resulting from a resp infection could bring back her PPHN....that's all I know. I was posting here to find out if anyone had ever heard about that before b/c it really surprised me. But what the ped and everyone else told me was to be careful for the 1st year and then going into NEXT cold/flu season she'd be the same as any other baby born wo problems. I think I'll still be scared of flu though, especially while she's <2, and I'm not keeping my DD home from school next year.