#AsktheMayoMom about Pediatric Congenital Heart Defects

Thu, Oct 20, 2016
2:30pm to 3:00pm CT

Description

Dr. Angela Mattke and Dr. Joseph Dearani, cardiac surgeon and chair of Cardiac Surgery, talk about pediatric congenital heart disorders.

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Dr. Mattke and Dr. Dearani answered questions live during the event.

Location

Online

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.

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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.

Hi @julioborhidan @dorothyma3 @graceuk16 @katiehuston @manyula @joannenz @christinamm @bellheartmom @hannahfgibson @goodgrief16 @sascha2432 Many thanks for posting your questions, which were incorporated into the discussion with Dr. Mattke and Dr. Dearani.

Mayo Clinic Connect is a welcoming and safe community where you can connect with other patient families to exchange information, ask questions and offer support. I hope you’ll continue connect here on Connect.

@bellheartmom

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.

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Hi, @bellheartmom. Here is a response from Dr. Dearani: Mitral regurgitation is not commonly associated with TAPVR. The medical program that your child is on appears to be appropriate. If the mitral regurgitation continues to get worse and the heart starts to show evidence of dilatation then it is possible that surgical intervention may be necessary. If surgery is needed, mitral valve repair would be the preferred operation.

@hannahfgibson

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.

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Hi, @hannahfgibson. Thank you for asking a question during our #AsktheMayoMom broadcast! We’re sorry we didn’t have time to answer your question during the broadcast. Here is a response from Dr. Dearani: It appears that your son is going down the treatment algorithm that ultimately results in the Fontan procedure. Anatomy of the criss cross heart is complex but the details of this are less critical if the decision has been made to go down the Fontan pathway. The surgery for the Fontan procedure (most often) is done without interfering with any of the internal anatomy of the heart.

@goodgrief16

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.

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Hi, @goodgrief16. Thank you for participating in our #AsktheMayoMom broadcast! Here’s a response from Dr. Dearani you may find helpful: A newborn with heart enlargement to this degree can be quite challenging to manage after delivery. The decision of whether to operate or not would be determined at that time. The cone procedure is generally reserved beyond the newborn period and preferably between 2-5 years of age. If surgery is required in the first few months of life the operation that gets advised is generally based on the experience of the surgeon and the institution.

@sascha2432

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?

Jump to this post

Hi, @sascha2432. Thank you for participating in our #AsktheMayoMom broadcast! We’re sorry we didn’t get time to answer your question live. Here’s a response from Dr. Dearani: This is a well-documented late problem following the Fontan procedure. A knowledgeable cardiologist should be involved with medical management and gathering imaging and other medical testing to determine whether there is a role for a cath lab intervention, or surgery, or transplantation in some instances.

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