Fetal Congenital Heart Disease

I am 21 weeks pregnant. My baby has been diagnosed with the following,

Subaortic VSD, aorta committed to right ventricle, very hypoplastic pulmonary valve, right arch mirror image branching with duct from left subclavian artery and retrograde flow.

He will require heart procedure at about two days old and open heart surgery around 3-6months old and further heart procedures throughout his lifetime.

I am seeking advice, help, real life stories of parents who have gone through this. Anything you can share would be most appreciated. We are at a loss and not sure what to do.

[Milkfairy Heart Star]

Hello,

Welcome to the forum,

Congratulations on your pregnancy.

I am sorry that you have received the news that your newborn baby will need heart surgery.

This must have come as a such shock to you and your family.

You may find the support you need from other parents from these charities.

tinytickers.org/

chfed.org.uk/

Perhaps also give the BHF helpline a call and speak to one of the cardiac nurses too?

bhf.org.uk/informationsuppo...

I wish you and your baby the best of luck .

I hope you and your partner are able to make contact with other parents who can share their experiences with you.

[Hidden in reply to Milkfairy]

Thank you so much for your advice.

[Hidden]

I'm not able to give you any advice. I just want to send you 🤗😍 on your long journey. We have fantastic surgeons so you are in good hands. Thinking of you.

[Hidden in reply to Hidden]

That's so kind of you, thank you so much.

[TGA1985]

Hello,

I can’t give you any real advice as to what to do or what will happen with your little one. I am not the parent of a baby born with CHD, but I am the baby that was born with CHD, or Transposition of the Great Arteries to be more specific.

Similarly to what you have said, I had a small procedure at only a few days old, and then had my Mustards operation at 7 months old, which had to be redone at around 13 years due to puberty and my artificial baffle not growing with my rapidly changing body.

I’m not sure if this will offer any reassurance or comfort, and I understand all cases are different and complex. However, I am now 39, soon to be 40. I have been able to live a very normal life. I am active and fit, I have a good full time job, a loving relationship and a house and mortgage to boot.

For my 39 years I have had regular check ups and tests under The Royal Brompton, and could never fault their care and thoroughness. Until only recently I have been able to live completely free of medication, but have needed to start taking Valsartan to help slow my heart rate.

From my parents point of view when we have discussed my birth and my condition, the only thing I think my Mum wishes she had was more and better support with groups and other parents… but is was the 80’s so this just didn’t exist. But that is so different now, and posting here as you already have, and talking to organisations like the BHF, will help so much.

I hope this helps a little with what can be a really difficult time.

[Hidden in reply to TGA1985]

Thank you so much for your message and the encouragement. Wish you all the best.

[Summerlavender]

Hi,

I’m so sorry to hear you have found out your baby has heart problems, it’s just not what you expect to hear when you go for a scan.

There are so many places to find support as were mentioned by an earlier poster, plus I have found with myself and my family in the past that the medical staff really do lift you up, both with what they do for you and how they make everything feel ok and like you are not alone.

Coincidentally I’ve just had OHS for a replacement valve and I have to say it was really not as painful as I expected, the worst bit was the worrying about it beforehand.

I hope everything goes ok for you all, best wishes ❤️

[Hidden in reply to Summerlavender]

Thank you so much for your encouragement x

[completely-zero654]

Hello Hidden, I am very sad to have read this can't give you any help but will pray for your baby, it is so unfair that this has happened to one of the kindest people here just wish that this had not have been like this for you.

All the bad people get away from everything and all the good get it all it's so wrong. I am sure all those clever surgeons, doctors and nurses will help your little one to grow up and be very strong also have a proud mum & dad.

Take the best of care Hidden and am always around here should you need a shoulder. xxxxx