u/Unhappy_Ad4506

My son who is almost 5 was born with critical pulmonary stenosis / absent pulmonary valve syndrome, pda, PFO & ASD
Due to his right ventricle working so hard it’s small. Some cardiologist say borderline hypoplastic some say small. He has all three sections but the middle one is very thick with muscle and restrictive.

So after a failed balloon attempt at 4 weeks they said actually his valve is so small it’s non existent so they called it absent pulmonary valve syndrome. He then underwent ohs at 4 months to give him a transanular patch and close his pda. The surgery was not straight forward and he nearly didn’t make it, once they did the work his sats were in the 50s.

He ended up with a bt shunt and they enlarged the ASD. The last four and a bit years we’ve been in a watch and wait phase. His team were hopeful that the right ventricle hypertrophic muscle would relax, and therefore his right ventricle would be an ok size. So they hoped they could just remove the bt shunt and he’d have a relatively normal life but recently they’ve said that the rv isn’t relaxing like they’d hoped so they are pretty certain we’re heading for 1.5 ventricle repair.

His team do want a second opinion from GOSH because he is complex and unusual.

Just wondered if anyone here had been in this situation before? Did you/your child get the 1.5 ventricle or did they manage to keep biventricle circulation?

How is life with a 1.5 ventricle circulation?

How was surgery?

Hey I have an almost 5 year old child with complex chd, brain infarcts and epilepsy.

He is struggling since he started school as he feels very different than the other children. Before he started school he was a very happy child.

He can’t keep up physically and has started to call himself a loser amongst other things. He’s told me he is jealous that the other children zoom past him and that other children do things so easily and he can’t. He compared himself to Loki thors brother and said he might be driven mad by jealousy which made my heart break and also made me chuckle all at the same time.

He struggles with how loud school is too and is very dysregulated by the experience. He tells me he is lonely a lot at school as he stays in one corner where it’s quiet.

He seems very advanced emotionally to me like he expresses his feelings so well.

His confidence has plummeted. He doesn’t even attempt things that he was doing well with as his teachers are pushing him too hard.

I’m really worried about his mental health. He has a ton of medical appointments every month. He also has another open heart surgery coming up soon. I just feel like any child’s mental health is super important but with what he’s been through and still has to come throughout the rest of his life he needs extra help.

Hey
So my husband 34M started cross dressing a few years ago now. He only does it in the bedroom. It’s something we’ve done together and grown together with. He wanted me to be more dominant when he is dressed up. At first I didn’t love it because I wasn’t a very dominant lover but as times gone on I’ve gotten more into it. We’ve pegged etc and both enjoy it.

More recently he is wanting to have a threesome with a trans woman who has a penis so we can both dominate him ..

I’m just not sure how I truly feel about this. Has anyone else been in this situation? Is he truly bi sexual and doesn’t admit it to himself? Will this escalate? I just don’t know what to think.

Everything I’ve read says Keppra causes balance issues so why has it had the opposite effect on my son?! He’s 4. Has an acquired brain injury from open heart surgery and had undiagnosed epilepsy for 2 years. Pretty much straight away starting Keppra his previously terrible balance improved. He couldn’t stand on one leg, climb up or onto anything, walk across a bench etc. the improvement is actually amazing. He’s been on it over 4 months now and it’s been life changing (for seizures too aswell as this).

Everything I’ve read says Keppra causes balance issues so why has it had the opposite effect on my son?! He’s 4. Has an acquired brain injury from open heart surgery and had undiagnosed epilepsy for 2 years. Pretty much straight away starting Keppra his previously terrible balance improved. He couldn’t stand on one leg, climb up or onto anything, walk across a bench etc. the improvement is actually amazing. He’s been on it over 4 months now and it’s been life changing (for seizures too aswell as this).

Hey
Just wondering if there are any other parents in the uk with a child with complex chd who just struggle with the lack of help.
My child has a cardiologist and that’s it .. literally that is all - until just recently when he got a neurologist because it was found he has sustained a brain injury from open heart surgery and developed epilepsy.
He has complex chd, absent pulmonary valve syndrome, a hypoplastic right ventricle amongst other defects. His oxygen levels are mid to high 80s and rest but can drop into the 70s now he’s on a beta blocker when he moves.
There’s a massive established link between chd and neuro developmental issues ..
And we’re in such a developed country yet there’s nothing.

He’s struggling at school and school are now asking how he doesn’t have a general paediatrician, why he hasn’t had an OT assessment etc etc.

His epilepsy nurse is appalled at the lack of help we’ve had.

I’ve been waiting for a wheelchair services referral for over 12 months now so I just bought him a paediatric wheelchair myself because I couldn’t keep carrying him.

I’ve read a lot about how in other countries there’s just standard follow ups for kids with chd and development programmes in school, even in countries that are no where near the advancement of the uk in terms of healthcare.

My mind is just blown and I’m venting but I’m fuming at the lack of help we’ve had.

I don’t begrudge doing anything for my son at all but I just think he could be living a much better life if we had support. School are saying he struggles socially and emotionally, with self care and with mobility and balance.

I sought advice from the gp when he struggled with toileting and he actually said ‘well he’s alive isn’t he’ and that genuinely seems to be the attitude of the nhs towards chd children. I don’t get it.

Has anyone else found this?
Has anyone accessed services that you feel would help in my circumstances?

We were meant to have a specialist health visitor apparently - get this! The first time I ever heard from her was when she was discharging us because he’s about to start school ?!!

If you got this far thanks for reading my rant and if you can offer any advice thanks!

Hey
Just wondering if there are any other parents in the uk with a child with complex chd who just struggle with the lack of help.
My child has a cardiologist and that’s it .. literally that is all.
He has complex chd, absent pulmonary valve syndrome, a hypoplastic right ventricle amongst other defects. His oxygen levels are mid to high 80s and rest but can drop into the 70s now he’s on a beta blocker when he moves.
There’s a massive established link between chd and neuro developmental issues ..
And we’re in such a developed country yet there’s nothing.

He has now been diagnosed with a brain injury due to ohs and epilepsy so he has a neurologist now too and still nothing no help.

He’s struggling at school and school are now asking how he doesn’t have a general paediatrician, why he hasn’t had an OT assessment etc etc.

His epilepsy nurse is appalled at the lack of help we’ve had.

I’ve been waiting for a wheelchair services referral for over 12 months now so I just bought him a paediatric wheelchair myself because I couldn’t keep carrying him.

I’ve read a lot about how in other countries there’s just standard follow ups for kids, even in countries that are no where near the advancement of the uk in terms of healthcare.

My mind is just blown and I’m venting but I’m fuming at the lack of help.

I sought advice from the gp when he struggled with toileting and he actually said ‘well he’s alive isn’t he’ and that genuinely seems to be the attitude oh the nhs towards chd children. I don’t get it.

Has anyone else found this?
Has anyone accessed services that you feel would help in my circumstances?

We were meant to have a specialist health visitor apparently - get this! The first time I ever heard from her was when she was discharging us because he’s about to start school ?!!

If you got this far thanks for reading my rant.