PDA and Coarctation removal by Thoracotomy- Risks in 11 month old baby

[Sushil1786]

HiMy daughter will undergo surgery for closure of PDA and Pseudo coarctation using the Thoracotomy. I read lots of papers around a high percent of patients developing scoliosis ? Do we have anyone in the community who had this surgery when they were 11 months old or know someone who had it done ?

Thanks

S

[Milkfairy Heart Star]

Hello,

I am sorry to hear your baby daughter is going to have heart surgery. I hope all goes well for the surgery.

Have you discussed your concerns with your daughter's cardiology team?

You may find more support from the Sommerville Foundation which is a charity for young adults born with congenital heart problems. They may be able to answer your query.

sfhearts.org.uk/

Another charity is The Children's Heart Federation

chfed.org.uk/

[ScoobyDoo71]

Hi Sushil, I’m in my early 50s now and had a PDA ligated via thoracotomy when i was

18 months old. There were some other bits too that combined have now started catching up with me as ive got older.

Obviously a lot has changed in last 50 years.

I have very slight scoliosis at the back, my rib cage at the front has the left side higher than the right, only noticeable when lying down.

Issues with this are that my echo pictures are always poor which is frustrating as I never feel that things have fully been assessed.

I do get back pain more so now as I’ve got older and have had physio.

If I had my time again and knew then what I know now I would be ensuring your daughter gets access to physio early to give exercise programme that will help strengthen her whole core muscles.

Perhaps if it’s safe for her Pilates may help with stretching and muscle strength. This is what I am looking at starting now but I wish I had done it years ago.

Wishing you both well for the op and the future. The op enabled me to stay well have a career have children.

Only note is make sure she stays in follow up care throughout her entire life with congenital cardiology specialists.

Good luck