@te1234 I personally don't know of anyone who has this condition. I do have a cousin that was born with her heart outside of the chest due to a rare condition called "ectopia cordis". Here is some information which you are probably already familiar with.

Scimitar syndrome is so rare that it’s completely understandable you haven’t met anyone else with it. Many people with congenital heart conditions grow up without ever meeting someone with the same combination of findings.

Here’s what’s known from the medical literature and from patient communities:

• Dextrocardia (heart shifted toward the right):

This is fairly common in scimitar syndrome. It happens because the right lung is often smaller, so the heart shifts into that space.

• Right lung hypoplasia:

Also very common. Many people with scimitar have an under-developed right lung and sometimes fewer bronchial segments. Lung function varies—some people have no daily symptoms; others have mild exercise intolerance or more frequent respiratory infections.

• Congenital scoliosis:

Less common, but still reported. Because the chest cavity can be asymmetric (from the lung hypoplasia and heart position), some patients do develop scoliosis or other skeletal differences. There are case reports describing this combination.

• Adult experiences:

People who had surgery in infancy often do very well into adulthood. Some things that come up in adult follow-up include:

Monitoring for pulmonary hypertension.

Watching for any residual abnormal blood flow.

Tracking lung function.

Occasional arrhythmias.
But many adults remain stable for decades.

• You’re not alone—even if it feels that way.
The condition is so rare (roughly 1–3 in 100,000) that most patients never meet another person with it, but the pattern you describe is documented. Some congenital heart disease centers have adult congenital heart disease (ACHD) support groups where you may find others with rare diagnoses.

Hello @te1234,

I want to welcome you to Mayo Connect. I see that @tommy901 has already provided you with some background information. I did an internet search and found that scimitar syndrome is considered an orphan disease (i.e., rare). Here is a link to the information I found from Orphanet: https://www.orpha.net/en/disease/detail/185

I see that you were diagnosed with this disorder at 9 months of age. Besides the surgery you had at that time, what other treatments or medications have you taken for this? Do you have regular follow-ups with a cardiologist or pulmonologist? What is the most bothersome symptom(s) you currently have?