Help - unformed right ventricle!

[Ky]

Hi

I had an echo today on my bub (due january) at Westmead and was told that the previously thought hole in bubs heart (from local ultrasound) was actually a virtually unformed right ventricle and an oversized left ventricle with both of the valves attached to it.

Bub is going to need surgery at a few days old then at around 3 months and then again at approx 3 years (the major ones - best case scenario).

I'm still really stunned by the news and just need reassurance that all will be ok ...

It means I can't have bub at home - it has to be Westmead and we will have to uproot the family/put strain on finances etc to be there for bub. We are a very low income family and I don't know how we are going to cope and yet I know that we have to as bub needs us!

Help :gloomy:

[Pixie]

Oh lovey :hugs: one of my younger brothers had this and had surgery at the ages they have told you and his heart is OK now.

Still a very horrible and scary time for you.:hugs::hugs:

[Freya]

Hey firstly :hugs: to you and your family I can't begin to imagine what you are feeling at the moment...

My sister has been offered to have brain surgery at no cost by a doctor at westmead... I was thinking could there be some way that you could try and get them to help you? Or some kind of financial assistance? Would be good to look into to find out your options... Good Luck with everything!

[SixtiesChild]

Praying for a miracle for your baby & you & your family.

[Kizmet]

i couldnt read this thread and not send you some :hugs: in support:hugs: :hugs:

[reAllytee]

You are all in my thoughts & prayers :hugs: :hugs: :hugs: :hugs: :hugs:

[sunshyne]

Hi my thoughts are with you.

I hope you have some luck with financial support, sorry i cant even help with any info.

BIG :hugs: TO YOU AND YOUR FAMILY

[kiwibird27]

Hello....I'm sorry this has happened but know these words don't mean much right nor, My DD was admitted at 1 week old and it was the beginning of a 3 1/2 month stay and then several other long stays also. She has a totally different genetic metabolic issue but has had heart surgery as she kept developing fluid around it, nothing similar to your surgery however. Many other surgeries though...about 15 all up.

I was put on the renal and cardiac ward at Randwick so got to know alot of the cardiac babies and can i say the recovery rate was brillant...I saw little tiny babies go in for heart valve surgery etc and go home after 2 weeks, It's was amazing to see, and luckily alot is known about the heart and surgery for this kind of thing is more common than u could imagine, I know right now they will b giving u statistics and preparing u for the worst, they always do, but u will find the strength and the hope u need to make it through this, The hospital stay won't b easy, not going to lie, but u will do it and meet some amazing people going through this journey.

Babies are resilient and can go through more than an adult and survive, u will go through the most horrific grief u have felt but then u will pull out of it and push forward.

In relation to financial strain, I know this very well, u should have been allocated a social worker, u must talk to her about this, most people don't, but they can help with meal vouchers, cheap parking, lots of financial support, there is also a scheme where the hospital can give u a granparent volunteer, that will sit with your son a few hours each week so u can have a break.......... The thought of leaving your son is probably horrible right now but u need to look after u!!!Please pm me if u need any support!!! Who is your cadiologist??? We had Steve Cooper, I think he visits Randwick from Westmead!!!!

[Ky]

Who is your cadiologist??? We had Steve Cooper, I think he visits Randwick from Westmead!!!!

We have Steve Cooper too ... I found him incredibly approachable and very clear in his explainations.

The official name is "Double Inlet Left Ventricle"

Nat ... You don't know how much hope hearing that your brother got through this ok has given me - thankyou my friend :kiss:

I'm not really too worried about the financial side - even if we end up horribly in debt, bub is soooo worth it! It's just going to be hard going through a lot of this on my own as DH will have to work and the kids have school and pre-school so they will spend most of their time down here still.

I have an appointment with my local OB tomorrow, so hopefully I can get an idea of when I have to go to Westmead and Randwick next. I will make enquiries as to the finer points ie. social worker then.

My heart no longer feels like it is snapping in two every few minutes. It's more numb and practical now, so this is the time for me to get my organiser hat on and get prepared.

Thanks Guys ... take care

[GraceUnhearing]

oh sweet

i just wanted to send you heaps of hugs

:hugs: :hugs: :hugs: :hugs: :hugs: :hugs:

you know where to find me if you need to talk

im sure everything will be just fine
sounds like you bub is in good hands already!

[TeenyT]

Elias - we've just been given almost the same news. I've PM'd you....