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Original poster

Pulmonary Stenosis and or Noonan's - anyone had any experiences?

19 replies

fcc86 · 09/01/2018 20:14

Hi,

I'm 26 weeks pregnant and we have recently had a diagnosis of pulmonary stenosis in our baby.

Has anyone else had a baby/child diagnosed with this heart condition? We are being well looked after by the doctors but it would be great to hear from another parent who has been through this themselves.

In addition to the heart defect, there is a risk the baby could have Noonan's Syndrome - we've found a limited amount of information about how often the two are linked but not much.

Thanks in advance!

OP posts:
Teenagedream · 09/01/2018 20:22

Not particularly relevant but I was born in 1959 with pulmonary stenosis. I had an operation at 5 yrs old and have led a normal life ever since.
Wishing you all the best xx

Original poster
fcc86 · 09/01/2018 21:19

That does help - thank you! Smile

OP posts:
NorthernLurker · 09/01/2018 22:16

Hi op, dd2 has pulmonary stenosis. Diagnosed after a murmur was heard at her 6 week check. She is now nearly 17 and not needed any intervention to date. They may possibly do a procedure at some future point but it doesn't impact in her life. Except she can't have piercings or tattoos because of increased risk of endocarditis. ShameGrinWink

Can they give you any idea how severe the stenosis is? Dd is mild/moderate.

StinkyMcgrinky · 09/01/2018 22:35

I have a pulmonary stenosis, born in 1988 and no intervention needed to date. When I was younger the plan was to undergo an op when I was in my late teens to fit a stent but it was never required. I'm now nearing 30, have two children and, apart from seeing a cardiologist every 2 years, have no other problems what so ever. (I do have piercings, much to my dad's disgust 😉)

Dental procedures require antibiotics afterwards to reduce risk of endocarditis and I have an extra scan in pregnancy to check babies heart but all well.

I hope it all works out the same for your little one Flowers

NorthernLurker · 09/01/2018 22:45

The current advice given to dd is that dental work doesn't need antibiotics BUT I read the guidance myself and requested antibiotics when she had an extraction which the dentist was happy to prescribe. I don't see why we should run that risk.

theconstantinoplegardener · 09/01/2018 22:51

One of my DDs had (very mild) left branch pulmonary stenosis diagnosed at birth, along with a small patent foramen ovale (hole in the heart). Both of these conditions had resolved themselves at her check-up six months later and she was discharged from the cardiology clinic with no restrictions or special care required. She's four now and very healthy and active.

StinkyMcgrinky · 09/01/2018 22:58

northern Yes, I think it changed as 'standard practice' a few years ago (2008 I think?). As a teen I had a big heart sticker on my dental records and was automatically prescribed ABs for anything out of the ordinary (fillings, extractions etc...) now my dentist says she isn't obliged to prescribe but feels better doing so if I'm happy with it. Thankfully I've only ever needed one extraction as an adult and all went well.

She did explain something about limiting the number of numbing injections I was permitted due to the PS and the effect they can have on the heart. (I want to say adrenaline related but I'm not a dentist) Medics are also fairly careful whenever anaesthetic is mentioned (pregnancy and one op) and I've had to meet with the consultant aneatheatist to make sure they're happy with me doing X, Y or Z. Again, so far no problems with anything. I've had 1 surgery and a spinal block with no ill effects

Dildals · 09/01/2018 23:03

Are you predominantly looking for whether the two are linked are you also looking to find out more about Noonans generally?

MiniDoofa · 09/01/2018 23:04

My 6 yr old DD has PS diagnosed at birth. She has annual checks with a cardiologist but has not required any intervention. They will continue to monitor her. She is a bubbly, fit healthy six year old and you really would not know she has this.
Good luck with your pregnancy OP.

DirtyWeeRascal · 10/01/2018 13:40

I have pulmonary valve stenosis and Noonan's syndrome - I understand that pulmonary valve stenosis is common with people with Noonan's. I had heart surgery as a toddler and a pacemaker fitted in primary school. My pulmonary stenosis is now moderate-severe and I will need further surgery in the next ten years but I keep very good health and only see my cardiologist once a year at present. As far as the Noonan's goes, I have some of the facial characteristics and I wear glasses. It am 5'4 and have a Masters's degree so haven't been affected in terms of height/learning difficulties etc. I do have a blood clotting disorder which may be linked. I am happily married and have two lovely children who are unaffected (there is a 50% chance of passing this on to them). I wish you all the best with your pregnancy - happy to answer any questions you may have.

Original poster
fcc86 · 10/01/2018 22:04

They've said mild to moderate so hoping for a positive outcome. We're hoping it'll be a straight forward fix after baby is born 🤞

OP posts:
Original poster
fcc86 · 10/01/2018 22:07

Thank you so much for all your replies - hearing from all of you has really put our minds at rest. So many wonderful and postive stories have helped me feel really positive about the future. Flowers

OP posts:
StinkyMcgrinky · 11/01/2018 07:28

fcc I met with my cardiologist just in the summer for my usual MOT. He said as far as his patients go I'm "...boring" 😁

I do regularly get asked to take part in medical exams as many doctors fail to pick up on my murmer and if I'm in hospital for any reason I've always had the student doctors/nurses sent my way and asked "....what's unusual about Mrs Stinky"

NorthernLurker · 11/01/2018 19:02

Dd took part in paeds exams once. Poor doctors were totally foxed by her Grin

SongToTheSiren · 12/01/2018 22:50

Hi fcc
I have a 6 yr DD with a pulmonary stenosis and Noonan's, which in her case wasn't picked up until after she was born. She is on the milder end of the scale and the PS wasn't spotted during pregnancy. When she was born she spent 4 weeks in SCBU whilst they were trying to figure out what was going on with her - she had the PS, jaundice, hypotonia and at first they were testing her for all sorts of scary sounding things. The diagnosis of Noonan's came some time later via appointments and testing with the clinical genetics team as well as pediatric cardiology. It's not inherited from DH or I, just a random mutation.

For a while we were in the same place as you,wondering what this all meant for DD and how she was going to be growing up - we'd never even heard of Noonans before she was diagnosed. As I say she is on the milder end of the scale, she now only has a cardio checkup every other year, has never needed treatment for the PS or been hospitalised (since her stay in SCBU as a newborn). The way she climbs trees and runs round you would never know she has a heart condition. She has had a lot of appointments at the hospital over the years with various teams - cardio, genetics, endocrinology as well as hearing and sight tests all of which have been fine and she takes it all in her stride. She's very much unfazed about going to hospital for checkups as she's used to it and knows that she was in the hospital for a bit as a baby.

The only differences with her is that she has some of the physical characteristics of Noonans - slightly wide set eyes and she is shorter than most kids her age and very slender. She is very bright, loves reading and has a reading age above her actual age. Also good with maths and loves school and learning in general.

All in all she is doing brilliantly and people meeting her have no idea there's anything going on with her, they just see a happy, chatty little girl. i sometimes wish I could go back to myself when she was a baby and let myself know that she's going to be fine and all the worrying I did wasn't necessary.

Congrats on your pregnancy and I wish you all the best. I'm sure your little one will do brilliantly as well SmileFlowers

missmapp · 12/01/2018 23:01

Ds2 has pulmonary stenosis and noonans. He is now ten and doing well. We also found out when pg with him so had all-out concerns. He had lots of hospital appointment s when he was younger but is now seen yearly by his heart consultant. His stenosis is mild ,he has no symptoms and it doesn't stop him doing anything. He has just been diagnosed with dyspraxia ,which can be common with noonons, and has a few problems with processing but is happy in school, has friends and lots of interests and is healthy.
Try not to worry, once they know about a heart condition there is so much care and treatment.

Original poster
fcc86 · 13/01/2018 08:39

This is really reassuring thank you! So pleased your little girl is well and happy 💘

OP posts:
Original poster
fcc86 · 13/01/2018 08:42

Thank you for sharing 😁 I'm glad your little guy is happy and it's not caused too many issues for him growing up. 💘

OP posts:
Linzisalon · 02/03/2022 20:23

Hello, can I ask does she need check up every so often or has she been completely signed off? Has it completely disappeared?

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