Paediatric pulmonary hypertension at Great Ormond Street

[ThaliaFailure]

Does anyone have any experience of paediatric pulmonary hypertension? My son is two and has just been referred to Great Ormond Street as this condition is strongly suspected.

It would be good to hear about treatments and the experience at GOSH if anyone else has been through it. I am very worried.

I don’t know about the condition or treatment, but my son was at GOSH several years ago for something different. Fab hospital.

I don't know about the paediatric version of the illness but my sister was diagnosed with pulmonary hypertension in her 20's. We live in northern Ireland so treatment here was scarce and she had to travel to Freeman's hospital in England several times for tests/monitoring etc, we also have no transplant service here, it was a difficult time and unfortunately my sister passed away before a transplant on the mainland became available.

Thank you for your reply. I think knowing we are going to GOSH makes it worse for me as I connect it with the sickest children - stupid really, as we will be very lucky to be under world-class care! My son already has another serious condition with many medical specialists involved but that has been managed at a regional centre, so this feels very scary all of a sudden.

I'm glad you have had such a good experience of the hospital and thank you for the reassurance: I appreciate you taking the time to post.

I'm very sorry to hear about your sister, @Realisation14 . I'm also sorry that you had such a difficult path accessing the care for her.

I was told by our cardiologist that there are no curative treatments; he mentioned using a range of different medications for supportive care.

My son already has a different serious disorder and reading about the prognosis for pulmonary hypertension feels really very cruel. I'm sad that you and your family had to go through it too.

I appreciate your message, thank you.

I get you mean about not wanting to be there, as by default, it means that your child is ill.

My son was in GOSH at the end of January, so a month after Christmas (and his birthday). People sent ‘get well cards’. I couldn’t put them up as I didn’t t want to be the parent needing them, and only a few weeks earlier I’d been sent ‘happy’ cards.

Wishing your dc all the best.

Yes unfortunately there is no cure and usually a transplant of either the heart, lungs or both is required eventually down the line. I am so sorry your baby likely has this, it really is a very cruel disease and has very little awareness surrounding it either. What is the other condition he has, as both could be related.

The first thing my sisters cardiologist told her after diagnosis was "do not Google this" - that's what you don't want to hear about any diagnosis right? Pulmonary hypertension association UK are a wonderful charity who I've raised money for and they will have someone who can chat to you and give you the most up to date information in terms of treatment and prognosis. You are in my thoughts x

Yep, Google has been horrifying. His other condition is chromosomal and extremely rare, so has very little info about it online: I would say I prefer the lack of info to everything I have found about PH.

I have just emailed the charity helpline and ordered a leaflet they produce on the diagnosis in children. At least I will be as prepared as possible if he does get the diagnosis.

Thank you for the advice x

Yeah Google is not your friend right now. I really hope they are wrong and this isn't the diagnosis he gets x

Hoping everything has turned out well fur you, or if not so good, you are getting excellent treatment and care.

Thank you. We are still waiting to be called in. It turns out an urgent referral to the service still takes eight weeks...!

Luckily, we have a fantastic paediatric consultant on our side who is like a dog with a bone, but even with her pushing as hard as she can, it still feels like a terribly long wait.

That's horrible OP, the wait and anticipation. I hope you're okay.

Well, we saw our usual cardiology team yesterday (still waiting for GOSH) and the diagnosis of pulmonary hypertension has been confirmed. I was expecting it but it has made me feel very numb and very sad.

The doctor wouldn't be drawn on prognosis, level of severity or subtype (though it can only be group one, PAH, from what I've read) as he is not an expert and GOSH will do tons more testing to narrow things down. He also said that they will decide how "aggressive" treatment will have to be, and though I know it is a medical word it has really freaked me out.

I'm just hoping we can get the testing out of the way before Christmas as I want us to be at home and settled for my older DS.

Forgot to say, I really appreciate the listening ears and checking in.

OP I am really really sorry you've had this diagnosis confirmed for your little one. Please keep us updated on the next steps, I'm here to listen and will probably understand most of the terminology due to my sister. It's been 11yrs but the information never leaves you.

Hi OP
My best friend’s daughter had PH. She also had a rare form of it. She was diagnosed around 5 years ago when she was 7 years old. She was treated at GOSH. The staff there are fantastic. She has had a double lung transplant and is thriving. Turning into an awesome teenager who lives a full life . Like the previous poster we live in NI, so they had to travel to London but GOSH also sorted out all the travel and accommodation for them.

It was a harrowing time for her family but your little boy will be in the best of the best hands at GOSH. I would also say don’t google . Every case is different and the treatments are so much more refined now with the technology they have. Wishing you the best. Xx

https://thedinosaurtrust.com

A research and charity that you may find helpful.