#AsktheMayoMom about Pediatric Congenital Heart Defects

Dr. Dearani, our son has TOF with severe pulmonary stenosis. The full repair was performed at Mayo in 2014. The pulmonary valve was not spared. Our son is now closing in on three years old and we were told at his last visit, that he would be looking at PVR before the age of 10. My husband & I are curious where Mayo Clinic is in the research phase and/or trial phases of stem cell treatment for heart valves in the pediatric population. Is the FDA closer to approving trials than they were three years ago? Secondly, what is being done at Mayo and on a national level, to collect data on our heart kids, with respect to surgical outcomes, neurodevelopmental delays, reintervention rates and successes, and so on, as these children age and join the adult chd population? Thank you for your time.

Thank you @graceuk16 @manyula @katiehuston @joannenz and @christinamm for your questions for Dr. Dearani and Dr. Mattke. The doctors will answer your questions in general terms during the live event tomorrow, Oct 20. Should you wish a consult or a review of your child's your medical records, please send them to Dr. Joseph Dearani. He can review and make a recommendation based on those records. You may call 1-507-255-2000 or mail to Dr. Joseph Dearani at Mayo Clinic, 200 1st Street SW, Rochester, MN 55905. You can also contact the appointments office using the contact form or phone numbers on this webpage http://mayocl.in/1mtmR63

I look forward to seeing you online tomorrow.

Hola @manyula. ¡Bienvenida a Connect! Es muy difícil cuando alguien que queremos recibe un diagnóstico como el de su hijo. Apreciamos su interés de participar en el Facebook en vivo sobre defectos congénitos del corazón.

Además, la invitamos a participar en nuestro grupo de Connect en Español donde podría compartir su experiencia con otros miembros como @guadalupe quien tiene una hija pequeña que también ha sido diagnosticada con problemas del corazón.

Hi, will it be possible to get a recording of the event? Thank you.

Yes, the video will be archived and can be watched after the event right here on this page.

If possible I would like to know more about the use of ACE inhibitors for treatment of mitral valve regurgitation. My daughter was born with infracardiac TAPVR that was repaired at 17 days. Due to the repair she has mitral value regurgitation. The surgeons were hopeful it would improve with time but now she is 4 and it is getting worse. We are currently trying and ACEi at a low dose before we consider surgery. Any information you can provide around the safety and efficacy of this treatment would be appreciated. I am also interested in any risks associated with long term use of ACEi in children. If she does need surgery - any questions that we should be asking specifically about mitral valve repair. Thanks for all you do and for sharing your knowledge.

My 18 month old son has Criss Cross heart in conjunction with DORV, ASD, VSD and pulmonary stenosis. He has had 3 OHS so far including PDA ligation, BT shunt and atrial septosomy and finally the Glen in Jan 2016 with Fontan planned for sometime in next 18 months. All treatment to date has taken place at the Royal Brompton Hospital in London. As criss cross heart is so rare we have not been able to obtain much information as regards long term prognosis or possible further treatments post fontan. I would be interested to hear your experiences of treating this condition especially as regards future treatment/condition management. Many Thanks in advance.

I am 22 weeks, 5 days pregnant and our baby was just diagnosed with an Epstein's anomaly with severe right atrial enlargement 2 weeks ago (specifically, her heart takes up 86% of her chest cavity). We are being followed at the University of Iowa currently. Are there any procedures that you can perform at Mayo that are not available at places such as the University of Iowa? I had read about something called a cone procedure, what type of CHDs qualify for this and what does this particular procedure involve? We are considering seeking a second opinion at Mayo clinic.

I know of someone who has Tricuspid Atresia and had the Fontan and Reconstructive Fontan. Has profuse PLE and leakage in legs, leg ulcers. How should it be treated and could it be stopped?

Dr. Dearani & Dr. Mattke, thank you for this wonderful method of communication today. THANK YOU for using the words, "accountability & ownership", as we navigate the world of CHD with our children. Many blessings.