Anyone with a septal defect (ventricular) diagnosed in adulthood?

Please don't feel bad!

I'm sure that you in no way neglected your child.

It's impossible to know absolutely everything about someone's condition. Besides, there are now routine imaging and diagnostic tools that weren't available 50 years ago.

I'm an example. All my life, people made fun of the way I walk. It was dismissed as laziness on my part.
When I was 39, I had a knee Xray and learned I have a birth defect in my legs; my lower leg bones are fused. With no flexion in my lower legs, my walk was both stiff and bouncy, plus it put a lot of strain on my knees and ankles. (And since having a stroke, I can barely walk at all.)

It never occurred to anyone that I had a skeletal problem. Just the way things are.

Don't be hard on yourself.

@scottrl
Thank you for your words of encouragement.
I’m sorry to hear of your situation and encourage you to keep going and do whatever you can.

@phyllisq Thank you.
I try to stay positive and encourage and inspire others.
To that end, I have a YouTube channel about my stroke recovery journey, "From Recovery to Discovery":
https://m.youtube.com/@srlucado/videos
Please have a look.

Hello, first of all it is not your fault that the VSD was just now detected. I am sure it must be a very small hole, or a Dr would have detected long before 50 years old. I was also born with a VSD and was treated for it all my life. I did not have it corrected until I was 65 years old. I don’t know if you live close to an Adult Congenital heart center, but if you do I would suggest your daughter make an appointment with them and have them evaluate it. Also there is lots of good information on the Adult Congenital Heart Association website. There will be a list of centers there also. This is not anything to worry about. Best thing is to get checked out by experts and educate yourself. Best wishes

Hello @phyllisq, it looks like this is your first post, so let me welcome you to Mayo Clinic Connect.
I second the thoughts from @df7 and @scottrl , this is not your fault!
I am not sure if you have had a chance to search online, but I did find this doing a cursory search:

**Adults with a recently diagnosed ventricular septal defect (VSD) typically require lifelong monitoring by a specialist in adult congenital heart disease to manage risks such as heart failure, arrhythmias, and pulmonary hypertension. Because most VSDs are congenital, a new diagnosis in adulthood often reveals a small, previously undetected defect, though large defects may present with symptoms like shortness of breath or fatigue if they were missed in childhood.

Treatment and Management
Small VSDs: Often asymptomatic and may not require intervention; management usually involves regular checkups to monitor for changes in heart function or the development of aortic valve leakage.
Large or Symptomatic VSDs: May require repair via open-heart surgery (using a patch) or minimally invasive cardiac catheterization (using a plug or patch) to prevent complications like Eisenmenger syndrome.
Acquired VSDs: Rarely, adults may develop a VSD later in life as a complication of a heart attack (post-infarction rupture) or trauma, which is a critical condition often requiring emergency surgical care.
Long-Term Risks
Even after repair, adults with a history of VSD face a higher lifetime burden of morbidity compared to the general population, including reduced functional capacity and an increased risk of infective endocarditis. Consequently, patients are advised to maintain regular cardiology follow-ups and may need antibiotics before certain dental or surgical procedures to protect against heart infections. **

I was 62 years old when I was diagnosed with a congenital heart disease, hypertrophic cardiomyopathy, or HCM. Not only that, but it was severe and obstructed, so I ended up having open heart surgery at Mayo/Rochester.
To say I was surprised would be an understatement!

After learning as much as I could, the light bulbs just kept going off as to why, even as a youngster, I couldn't run as long as the other kids. I was diagnosed with a murmur at 21, and then four or five different heart conditions before the real culprit was determined.

I would advise you to walk away from feelings of guilt. This was not caused by you, it was decided long before she was born, and serves no purpose.
Instead, focus on helping your daughter and yourself by learning as much as you can. Find a Center of Excellence (COE) in the treatment of childhood heart conditions and get an opinion from at least one or two.
That way you will be informed and educated. Being in the know about what is happening takes away the fear of not knowing.

Being told there is no treatment does not sound like sound advise! Keep pushing! Don't quit!
Does she have an appointment with a cardiologist to go over options?

@phyllisq I want to join @karukgirl in welcoming you to Connect! I am so glad to see you create this discussion to work through your daughter’s new ventricular septal defect diagnosis. You have already received some helpful comments from members.

You may have reviewed already but in case not, here is what Mayo Clinic offers as a summary of ventricular septal defect. There is quite a bit of information here. I want to draw your attention to the statement that some are diagnosed as adults. Also, babies born with a serious defect are typically addressed within a few days after birth.

- Mayo Clinic Ventricular Septal Defect Overview
https://www.mayoclinic.org/diseases-conditions/ventricular-septal-defect/symptoms-causes/syc-20353495
I hope you particularly review the “treatment” section. Mayo Clinic has doctors treating ventricular septal defect at all their locations. You can contact them for an appointment here: http://mayocl.in/1mtmR63

I am so glad to see something in black-and-white for you, you did not miss this! How is your daughter feeling currently, and what is next for her?

@jlharsh I just this minute spoke to my daughter. She called from the hospital where she was admitted after a reaction to the dye used in a CAT scan to check the defect. They seem to be very thorough which is what we had hoped for. I guess we will know more after this. The cardiologist said he will continue to be monitoring her. I have to say that the many months delay was due to health insurance issues.
Thank you so much for your comments.

I never had the ASD until after I underwent a mitral valve repair. It is believed that it happened during the surgery. Surgery was old school with sternotomy. Induction is still painful after 13 years too.
Specialist decided not to repair ASD because it would increase my already elevated pressures. Stuck on blood thinner since before the mitral valve repair. It is a nuisance limiting foods and supplements I can have.
Echocardiograms twice a year or more.