Advice on best care practices- Dextrocardia Isolated

[DextroBaby]

Hello, and thanks in advance for any assistance.

A long time ago now, we were lucky enough to have a little girl with Dextrocardia situs solitus and no other issues (thankfully). She had many round of tests after birth, and a PCD test at about 2 years due to recurring chest infections and pneumonia.

However, said baby is now a teen of 15 and I guess I'm aware that as bodies grow and change, I don't know whether she should have another scan, a lung function, genetic blood test? I just have no idea whether I should be doing anything to help her with lifetime care of this or where to start.

All advice welcome.

[Tos92]

Hi DextroBaby

I hope you’re well.

I don’t have too much knowledge on dextrocardia situs solitus however, I am aware it’s a congenital heart defect where the heart is on the right side of the chest, instead of the left. I also have a congenital heart defect in the form of a myocardial bridge. From what I understand, both conditions can be harmless if not symptomatic. I unfortunately am, which causes a type of angina called vasospastic angina where my artery goes into spasm.

I think it is wise to have some tests conducted. Usually a starting point would be a simple ECG, followed by a CT scan perhaps, an echocardiogram and a heart MRI. However, these would need to be discussed with her cardiologist if she has one, and I suspect they would only refer her for testing if she remained symptomatic such as recurring chest infections and pneumonia as you’ve explained.

Unfortunately, the BHF website doesn’t seem to have any information on this specific heart condition. I have provided the number of BHFs cardiac nurses below. It may be worthwhile to have a chat with them as well and see what they suggest. They are open between 9-5pm Monday to Friday.

0300 330 3311

How is she doing now?

Keep us posted and I hope someone with more expertise on the condition comes along soon.

All the best.

Tos x

[Milkfairy Heart Star]

Hello DextroBaby,

Welcome to the forum.

It might be more helpful to get in contact with children's heart support groups.

They maybe able to help you further, including putting you in touch with other parents in the same situation.

You may find these support groups can help.

Children's Heart Foundation

chfed.org.uk/how-we-help/

Sommerville Foundation

chfed.org.uk/how-we-help/

I suggest you discuss this issue with your daughter's GP. Ask for them to look through your daughter's records to see if there is any useful information.

Also contact the hospital which carried out the orginal tests too. You can ask for her medical records and test results.

You can do this by contacting the Patient Advisory Liaison Service, PALS if you live in England.

Finally, I wish you and your daughter well.

As parents we never stop worrying about our children, even more so if they have health issues.

[DextroBaby in reply to Milkfairy]

Thank you both so very much, as there is so little information, it's very kind to have any advice. She's doing great now and I have no reason to worry, I suppose I am just aware that she has had no follow ups or anything since she was very little. Again thank you for the information and advise, D.