Thanks for checking in @Tamtam we are still waiting for an appointment. The fetal medicine specialist who did the scan is organising it but has said Dr Gooi is away so he is trying to get us in to see Dr Cameron Ward. Hopefully that will be Monday and then amnio Tuesday.
I found out yesterday I have gestational diabetes so I have a few appointments regarding that to attend next week as well.
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13-01-2016 15:32 #11
13-01-2016 15:55 #12
Cameron is actually our cardiologist! He's great. Very very impressive. Though some say he's a bit blunt his expertise is amazing.
You will be good hands.
I also got gestational diabetes during my pregnancy. So stressful. You feel like it's one thing after another.
I hope you're okay.
19-01-2016 06:07 #13
@Tamtam sorry it's taken a while to get back to you. We finally had our echo and appointment with Cameron yesterday.
He has confirmed hypoplastic mitral valve and left ventricle. He has indicated that we will require the 3 major surgeries post birth and that in all likely hood our little guy will have ongoing issues. He has also recommended an amnio so that will happen today or tomorrow.
The option of termination was also given to us but I just don't think we can do that.
Other than heart kids where else should we be looking for support/information?
19-01-2016 06:44 #14Junior Member
- Join Date
- Jan 2016
Hi. Sorry you have had this diagnosis. My son is 8 on Friday and has HLHS which is hypoplastic left heart syndrome so no left ventricle, no mitral valve and narrow aorta. He has had all 3 surgeries and is doing great. You wouldn't know he has only half a heart. Rides motorbikes, plays soccer, hyperactive. We have a great Facebook support page, you can ask any questions and we are all too have to help you out https://www.facebook.com/groups/HLHSaustralia/
19-01-2016 08:08 #15
Hi. It's good to finally have answers but also such a big shock. We were given 3 options at diagnosis
Surgeries (the three stages you were told of)
Or palliative. .as in take her home and enjoy the time we have with no intervention.
Like you I couldn't do a termination. Though I know the thought of surgeries and problems is extremely daunting and scary. My advice is not think too far ahead..just love your baby now. ... try to enjoy all the pregnancy and baby planning stuff you can. ..amidst the stress.
The Facebook pages are hugely supportive. As above. .the HLHS one is great (not a member but I have friends who are). Heart kids parents on facebook is another great one.
We were offered the amnio but I didn't do it.
Please keep chatting if you're up for it. Totally understand if it's too much.
Ps..I'll actually be up at LCCH on 5th Feb for my daughter's appointment with cameron. So if you are there due to another appointment I'd be happy to meet for coffee.
Pss..if you have lots of appointments there be sure to ask the social worker for some vouchers for parking. And get the forms signed for patient travel if you are a distance from it. (More than 50kms)
20-01-2016 18:45 #16
While heartbreaking it is so reassuring to have a diagnosis. The amnio was absolutely fine, only a little pain with the local anaesthetic and no issues with bleeding or fluid leaks.
We met Karen the cardiac nurse and have sent her an email with some questions. We will be catching up with a friend of DH who just happens to be a paediatrician and geneticist so while hearts aren't his main thing sick kids are and we are hoping to get some info about the basics. He is a truly great guy and I think it will help.
21-01-2016 05:52 #17Junior Member
- Join Date
- Jan 2016
Karen is wonderful! She is so open and friendly and you can ask her anything. I hope your paediatrician friend can help with any questions you have.
Can they do the surgery in Brisbane? Some kids with single ventricle diagnosis have to go to Sydney or Melbourne (we went to Melbourne for the first 2 surgeries and had third one in Brisbane).
21-01-2016 07:28 #18
I second pp... karen is lovely! I'm glad amnio was clear for you.
That's great you know someone who can support you! I wonder since he's a geneticist and paed if I've ever met him! There's not many of those around.
Sounds like you are doing okay all things considered.
When is your next scan?
21-01-2016 08:43 #19
Dave is a pretty quirky guy I'm sure you would remember meeting him.
We are meeting with Karen and Dr Ward again tomorrow as well as our ob.
At this stage they have said no need for another scan until 28 weeks so 6 weeks away.
21-01-2016 09:34 #20
Oh...his last name Coman???
You are in good hands with cameron. I hope the appointment goes well. Remember to try and write down any questions you may have for tomorrow and take notes in the meeting so you will remember what they said.
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