Pulmonary Stenosis.. any success stories?

[Babymumma01]

I’ve been told my baby has severe pulmonary stenosis & after birth will need a lot of neonatal care, both of us to be transferred & also 5 hour surgery. Like any mother.. i’ve been worried sick. This is my first child and i’m worried about labour and also the health of my child. It’s going to be a long journey and I know it’s worth it. I was just wondering if any other mumma’s have been through the same thing? If not then maybe some advice about labour as I am terrified. Due to be induced in a 3-4 weeks time. Some success stories would be appreciated

Any mums that can calm me? Due a c-section and im absolutely terrified... the thought of the needle and also being completely numb from the waist down terrifies me weirdly as I panic when not in control of my body. Not very good with hospitals or theatres regardless. This is my first baby and im scheduled in then next 8 days or so.. sleepless nights due to my anxiety over it. I’m a wimp over this stuff & put myself in extreme panic mode!!!

Hi, I had my first section in November. Both my twins were breech and they had a few problems so needed to arrive early at 34 weeks. I was terrified but it really wasn't that bad. I tired to focus on my midwife, she came with me from the ward and talked me through everything. I get the panic rising a little but she just talked calmly to me and held my hand. Felt a bit woozy at one point but they sorted that out, think my blood pressure had dropped. We had some time in neonatal too. Have you been able to go and look around?

Oh and I forgot to say the leg/numb thing was one of the things I was most scared about too! It's more of a gradual numbness. Once they've put the injection in (cold spray on back first so you hardly feel it) they then put up the screens etc so you feel almost detached from your legs visually anyway so that helps x

Just to say I had pulmonary stenosis when I was born and pretty much grew out of it, completely discharged from cardiology by the time I started secondary school as the valve had grown with me and it hasn't affected my life at all. I've also had an EMCS which was fine, seemed to be over very quickly. Going for an elective this time. Good luck.

I too had this. Spent 6 weeks in NICU then monitored till 10 years old and told I'd grown out of it so discharged from their care.

Sorry to hear you’ve been told this but I just wanted to share my experience. My DD has PS. It was not picked up until birth so we had quite a shock when she was rushed to special care at 2 hours old. Initially it was a significant problem and we were told she was likely to need surgery as a baby.

However as she grew the problem has resolved itself. As I understand it the PS is when the valve to the lungs is too small which increases the force of the flow of blood. However as DD has grown the valve has grown too and now she is fine.

They monitored her closely to start with and gradually they are doing less. The echocardiogram they use to monitor it is just an ultra sound so not invasive at all. She is now 6 and reduced to monitoring every 2 years.
The last time the paediatric cardiologist had difficulty even finding it. It’s basically normal now.

I know not all cases are so easy but it is not always as bad as it seems when they are tiny.

As for the CS I have had 2 and I found the thought of the epidural was far worse than the reality- I was so scared the first time but actually it was ok. The second time it was just a complete relief! Yes the recovery can be hard from a CS but the actual procedure is actually ok. They take care of you really well.

My daughter has moderate PS. It was detected after birth and has not required surgery. It sounds like your baby has a more severe defect but PS is a very operable condition with excellent outcomes.

Hello

I know how you are feeling as I am currently 29 weeks pregnant and was told at my 20 week scan my little one has a heart defect too.

Pulmonary stenosis is part of it (she actually has a condition called Tetralogy of Fallot where there are 4 issues - pulmonary stenosis being just one)

I'm not sure how much support or info you've had but I have found the British Heart Foundation website really helpful.

Here is some more information:

https://www.bhf.org.uk/~/media/files/publications/children-and-young-people/c4understanding-your-childs-heart-pulmonary-stenosis1208.pdf

I am also part of a Facebook group called Tetralogy of Fallot UK (maybe there will be a similar one regarding just PS) which I have found to be a huge comfort - full of success stories from babies, older children and adults! From what I've seen of others experiences, by the time DD is 2/3 apart from regular check ups I'm sure she will be the same as every other child her age and you wouldn't know she even has a heart condition.

I've come to feel like this is just a part of our journey now, a new "normal" and have decided I won't let it define our little girl. It's just a very small part of her life but won't be the defining point for us. I'm not sure how I will feel once she is here and I know I will be scared/anxious/upset but right now the positivity is really helping and just telling myself it's not a "big deal" as there are so many treatment options for us and maybe even better for you as some others have shared their experiences and have said they have just repaired themselves which is brilliant! (Doesn't happen with Tetralogy of Fallot unfortunately but I'm prepared for the surgery and know it's necessary)

I really hope the rest of your pregnancy journey goes smoothly. I have never had a C Section before (already have 1 DS) but I'm sure it won't be half as bad as the panic in the lead up, the anticipation of things are usually much worse than the reality sending hugs ❤️

Thank you mummas, wonderful calming stories

Hello all,
My daughter has this condition. It started as moderate and is now mild (she is 1). Her next scan will be in 6 months. The doctor said it may stay the same and will require lifelong monitoring, or it may improve or in some cases it can over time worsen and require intervention but that this was quite unlikely since hers is mild.
I wanted to revive this thread to hear how your babies are doing and send you all a big hug as this has been the hardest thing I have ever been through.
Thanks xx

Oh bless you! I know exact,y what you mean. I was terrified when my daughter was a baby. However it honestly never bothered her though. She's not long had her own baby. Normal pregnancy with an extra echo for her and cardiac scan for baby. All good. They did put an additional plan in for Labour out of an abundance of caution with induction at 39 weeks and abx in Labour. She found the extra monitoring in Labour annoying and as she didn't turn a hair throughout I suspect would refuse it another time but the main point is she had a healthy vaginal delivery. No after effects or issues with the heart at all. Your baby will be fine. As congenital heart defects go, this is one of the least problematic. Yes I wish she didn't have it but it's honestly absolutely ok, life long. Hers has been described as both mild and moderate btw, I think she's right on the cusp of the classification.

@pandafunfactory thank you so much for your reply. I’m so happy to hear your daughter has had a straightforward experience with no complications. And congratulations on her baby as well!
can I ask about the frequency of her scans? Has it limited her in any way having the stenosis that you’ve found? And did hers start as moderate and become mild or has it always changed between the two?
thank you again

I think when she was younger they said mild then moderate but I don't think her valve measurements have actually significantly changed iyswim. The only way it's ever limited her was not having her ears pierced due to endocarditis risk no tattoos either. But I think even that advice has changed now.
Her next scan is next month I think as they check after delivery that all is ok. But then it will be three years I expect.

When she was a baby we had the scan for diagnosis then one six months later then a year then two years then it went to three.

Just remembered the most helpful thing for me - when she was 5 we were asked to help with medical examinations as a test patient. She got paid £40 for the day which she spent on sylvanians. I reasoned there had to be an upside to having a heart defect!
The reason this was helpful because it helped me put the defect in to context. She was examined by 6 senior registrars. 4 had no idea what her defect was, 1 got it right, 1 mentioned it but plumped for something else. The findings are so subtle that without an echo (which they don't get in that exam) it was hard to work it out. Somehow that took a weight off me. If you've got a child with a heart defect that isn't impacting on their life at all to the extent that a skilled doctor can't even work out what it is, well there's not too much to worry about.
I would of course rather she didn't have this defect. It makes life slightly more complicated for her than her sisters but that's life. And lots of perfectly healthy babies will acquire much more serious problems than that in their childhood. I can't say don't worry because I know that's impossible and I worried dreadfully. But I can say that it's most likely that the worry is the worst thing about this, the heart defect itself won't cause her issues.