Hoping to find some advice here on heart blocks?

[Ozzieshunni]

I love BnB and the ladies are always so nice and helpful.

My LO was diagnosed with a heart block on Friday. Lots of appointments and monitoring to come.

Is there anyone on here who has a LO with a heart block or was diagnosed while pregnant? I'm dying for support close to "home" aka BnB.

 

[Aidedhoney]

Hiya hun

We dont have heart block but Alex was diagnoised antenatally with a major CHD. Bit of a rollercoaster the whole pregnancy.
Alexc has had 2 heart surgeries and 2 heart caths.

Any questions feel free to pm me

I am guessing you will see Dr Walayat at Ninewells? He is great, he is ALex's cardioligist.
I think with heart block its a case of a pacemaker once baby is here? It will be done at Yorkhill, i have spent an awful long time in Yorkhill so any questions pm me

 

[Aidedhoney]

Dunno if ts any help but found this link to when Alex was born

https://www.babyandbump.com/parenting-journals/175820-alex-his-major-heart-surgery-new-pics-pg6.html


Also the heartline forum is brilliant loads of heart mummies on there

 

[Ozzieshunni]

Wow, it is a small world. Heart block is where the electrical signal that starts at the top of the heart doesn't reach the bottom. Some babies don't end up needing pacemakers as their hearts speed up on their own when they are born. It's a pretty rare condition. I might have to deliver at Yorkhill, but they don't know at this point. It's one of those things that we have to take week by week. They are looking at possibly having him out at 28 weeks. Ironically, we've decided to call LO Alexander, Alex for short. Haven't seen the pediatric cardiologist yet, but it might be this week as I have a scan on Monday.

Thanks so much!

 

[Ozzieshunni]

What was the NICU like at Ninewells?

 

[Aidedhoney]

NICU at ninewells was lovely, rest assured if Alex has to go to NICU you will be given a private room! I was, all the midwives and nurses are lovely.
The midwife in charge at Ninewells (wendy) her son has a CHD and she was a fantastci support to me.
The NICU nurses and docs are amazing but hearts are very special and Ninewells isnt a crdiac hospital.

Alex was in NICU a week but my advice would be to deliver in Glasgow................All the heart docs are in Glasgow, My Alex was delivered on a Tuesday and Dr Walayat (whom i am sure you will meet) only holds a clinich once every 2weeks luckily the day after Alex was born he was up and did an echo, it would mean that Alex will get the best care right from the start.................i think your cardioligist will advise you what to do for the best.

 

[Aidedhoney]

haha just reading my reply back haha easy to spot whos been on the smirnoff ice hahaha

Feel free to add me on facebook there are lots of heart mummies there who will help you through the rollercoaster ahead.

[email protected]

 

[Ozzieshunni]

Thanks I'm very scared and nervous. When your LO was at Yorkhill, where did you stay? We don't have a car or anything.

 

[Aidedhoney]

The first op, we were transferred by ambulance and as Alex was newborn i stayed in ROnald Macdonal which is for parents of children in Yorkhill

Its a bit like a hotel. you get a room, with own toilet and bath/shower. There is a laundry costs £2.50 a load, a huge shared kitchen and a few tv lounges.
This is charity acc so itr free,

For Alex's last op and his heart caths i have stayed on the ward with him, there are some private rooms which you may or may not get and the bed bays.
One parent is allowed to stay on the ward.........you get a pull down bed at the bedside, there is showers/hospital canteen obviously when Alex was in PICU i couldnt stay so i had Ronald Macdonald again.

The hospital will go out of their way to help you. Once you are there you will be given a Cardiac Liason nurse and they are lovely any questions they will have the answers.

I have spent a lot of time in Yorkhill so know nearly all the docs and nurses and they are all fabbie there is honestly not a bad one.

 

[Ozzieshunni]

Ok, thanks for all that info. I don't work, so I know I won't be leaving. DH will have to come back to Arbroath to work and such. I know that it's a good hospital, but I secretly hope he can just stay at Ninewells because that means his condition won't be that bad that he needs to be at Yorkhill.

 

[Aidedhoney]

Yeah hun, i know what you mean, i was the same when i was pregnant with Alex. I so wanted everything to be fine, Alex was fine at delivery but he got sick really quick.

Yeah i stayed in Glasgow on my own and to be honest as long as your with lo nothing matters. You are allowed in at anytime on the ward same as PICU not sure about NICU as Alex wasnt there.

It will be a very hard time till Lo is here i found out at 16wks that there was a problem with Alex and at 22 wks Dr Walayat made the Truncus Arterosus diagnoises.
Was stressed to the max the whole pregancy, sometimes i felt like i was going off my head, i think in total i had 17 scans which sounds great but in reality you wouldbt wish it upon anyone.

 

[Ozzieshunni]

Exactly. LO was diagnosed at the 25 week check-up. I have to ask the consultant if his heart is structurally ok. I think they would have told me if it's not. It's just the electrical impulse that controls the beats is not reaching the bottom, so basically his heart is not pumping as effectively. What they are looking for at this point is any kind of fluid build up under his skin or around his organs. That would indicate that it is getting worse. Just hoping at the scan on Monday that it hasn't gotten worse. We know it won't get better atm, so staying the same is all we can hope for.

 

[Aidedhoney]

Will ask my Face book mums if anyone has any experience of heart block x

 

[Ozzieshunni]

LOL, I had to wave goodbye to my water birth at Arbroath when they found it.

 

[Ozzieshunni]

Thanks xx

 

[Aidedhoney]

I am sure they would have told you if it wasnt ok.

Yeah if there is a fluid build up thats when it would get serious, I was lucky that Alex's heart always looked as great as it could on his scans, have they checked chromsones?

 

[Ozzieshunni]

No, they are checking antibodies (Lupus), but it's unlikely that's what caused it, I don't have lupus. This isn't genetic. It just happens and they have no idea why. Neither of us have anything like this in either of our families.

 

[Aidedhoney]

LOL, I had to wave goodbye to my water birth at Arbroath when they found it.

LOL Welcome to the world of cardiac, you will learn things you never thought you would but i know its easy for me to say the pregnancy is actually the hard part.........these babies are fighters i have seen babies weighing 4lbs and less survive major heart surgery with no ill after effects. My Alex has done fab, yeah he had a stroke during his second op but hes hitting his milestones again.

The only thing that HVs and Docs will get stressed about is weight gain, cardic burn calories faster meaning poor weight gain so feeding tubes tend to be put in as a precaution also feeding can make some cardiac babies breathless.

 

[Aidedhoney]

Snap same here its just one of those things that happens but some heart conditions go hand in hand with Di George syndrome/Downs Syndrome etc etc.

Fingers crossed everything else is so called "normal"

I see your in Arbroath.........I am in Aberdeen, have a friend coming up here tomorrow from Arbroath lol


Oh one bit of advice that i was given is take lots of pics......i also did a pic story book of all ALex's ops n stuff so when hes bigger he can look back over it and see how far hes come

 

[Ozzieshunni]

Just have to see what happens. The consultant said she's seen cases of heart block where the heart does speed up once the baby is born and he might not need a pacemaker and they could fix the signal with an external electric impulse. It just depends. It totally sucks not knowing what's going to happen.