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Facebook Live: #AsktheMayoMom about Pediatric Congenital Heart Defects

Posted by @Margaret_Marie in Heart & Blood Health, Sep 20, 2016

On October 20th Dr. Angela Mattke and Dr. Joseph Dearani, cardiac surgeon and chair of Cardiac Surgery, hosted an #AsktheMayoMom video Q&A session about pediatric congenital heart disorders.

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Dr. Mattke and Dr. Dearani answers questions live during the event. Click REPLY to post a question below before and during the event.

dreambignow, Deanna Constans, joannenz and 2 others like this
julioborhidan

Posted by @julioborhidan, Oct 10, 2016

Hy. Ebstein anomaly with pulmonar atresy hipoplastico is this sever? We had BT SHUNT after 2 days of birth and 4mm, and atrioseptostomia rashkind after 9 days.. home after 12 days with furosemida espironolactona and acetilsalicilato.. now is 3 months old and using just the last one.. we go this month to our cardiologist for check... question is this sever? What should we do.. thank you from Portugal

colleenyoung

Posted by @colleenyoung, Oct 10, 2016

Thank you for re-posting your questions here, Julio.

julioborhidan likes this
deannaconstans

Posted by @deannaconstans, Oct 11, 2016

Hello @julioborhidan I forwarded your question to Dr. Dearani's team. While we can't diagnose a medical condition via this platform, if you could send your medical records 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. Thank you.

julioborhidan

Posted by @julioborhidan, Oct 13, 2016

Hy . Thank you.. do you have a email adress?

deannaconstans

Posted by @deannaconstans, Oct 17, 2016

@julioborhidan - I will check on the appropriate email and respond back to you.

dorothyma3

Posted by @dorothyma3, Oct 15, 2016

What kind of experiences and data do both of you have about donor tissue valve replacements?
If a 1 year old has had both tricuspid valve AND pulmonary valve replacements done at 18 months old what would your future treatment concerns be?
Could you explain why having both replacement valves may be favorable, or even why it isn't favorable to have both replacements compared to other surgical repairs?

Thank you!

colleenyoung

Posted by @colleenyoung, Oct 16, 2016

Welcome to Connect, @dorothyma3. What a beautiful profile image of you with your babies. I'm trying to understand the timeline of your question. Your child had a tricuspid valve and pulmonary valve replacements done at 18 months old. How old is your child now? What was done at 1 year old?

While we can't speak to an individual's medical condition on Connect, your opening and closing questions can be addressed in general. @deannaconstans will forward them to Dr. Dearani. Thank you!

dorothyma3

Posted by @dorothyma3, Oct 18, 2016

Thank you. My son was diagnosed at birth with severe Ebsteins anatomy, ASD, PDA, and pulmonary atresia with severe valve stenosis.
My son had his first open heart surgery at 7 months old (may 2015). He had a pulmonary valve patch placed for his severe pulmonary stenosis that kept returning after his caths. During this surgery his surgeon also did a tricuspid valve repair. He was doing great the first week post op but while in recovery he coded and the team discovered he had endocarditis and he went septic. The infection distroyed what tricuspid valve tissue he did have.
At 15 months old he had his second OHS (January 2016) where he went to the O.R an we planned for him to only have the Glenn procedure. They was not okay with him coming off the heart and lung machine when they trailed him off; his heart was not keeping up... So both his tricuspid and pulmonary valves was replaced with tissue valves and also he received a full pulmonary conduit. The Glenn was reversed after the replacements was successfully placed. He came off ecmo with ease.
Fast forward today he is now 24 months old (2 years old yayyy an 10 month post op) and doing amazing! He's like any other toddler! I was just curious to how may other doctors/surgeons experienced this type of repair? I really didn't want to explain his journey because I find some doctors tend to hold back on explaining the ugly/bad outcomes to parents.
The question about future treatment... My sons last check up was three months ago and they decided he now be seen every 6 months by his team. I feel that time span between appointments is to long considering all the risks possible with two valve replacements. I was just curious if there are different follow up plans for kids with two replacements valves, or is there no true plan and it's different with every case?

graceuk16

Posted by @graceuk16, Oct 16, 2016

Our daughter is 7 months old, has severe displacement of the tricuspid valve with severe regurgitation and an ASD which had reduced in size since she was born. She has no symptoms of her condition (so far) and is not on any medication. Our cardiologists believe that waiting to see what happens is the best option, and would prefer her to be in her teens before they operate - so at the moment there is no surgical plan. They can perform the cone, however the youngest patient they have performed the operation on is 9 years old - they have said it is too technical an operation to be completed on very young children.

We are concerned that their ability to operate is a factor on their surgical plan. I'd like to understand:
- what are the factors Dr Dearani uses to determine if/when surgery should be performed on a patient
- the questions patients/parents should be asking of their cardiologist to get the best understanding of their specific circumstances/condition.

Thanks so much x

manyula

Posted by @manyula, Oct 17, 2016

Mi hijo de 13 años ,fue hallazgo por ecodopler,ebstein leve,insuficiencia tricuspide moderado ,insuficiencia pulmonar leve,puede empeorar su diagnostico con los años o mantenerse siempre estable.no tiene sintomas ,solo un poco de falta de aire y ahora se le escucha un soplo ,

Posted by @gabrielamorabarthel, Oct 19, 2016

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.

Esperamos verla en el grupo de español y aquí le envío el enlace:

https://connect.mayoclinic.org/group/espanol/

katiehuston

Posted by @katiehuston, Oct 18, 2016

My 9 year old daughter has EA, as well as a PFO and WPW. Her valve is not leaking a whole lot so we have decided to wait for surgery. Her rhythm issues are her biggest . She is on a high dose of Atenolol. But still goes into svt. She has now started blacking out and getting dizzy. She had an ablation last year and it appeared to be successful. However a month later at follow up her delta wave was back. Our cardiologist said he would not try the ablation again until she was bigger because her AP is on the outside of her heart in a posterior septal location. My guess is that she needs to be bigger because the size of tools, but my question is, if a catheter is threaded through her femoral artery into the inside of her heart, how is the AP ablated when it's on the outside? Does the radio frequency burn through her heart? Would he use Cryo ablation instead?

joannenz

Posted by @joannenz, Oct 19, 2016

Hello, our 14 month old daughter has a complex combination of CHDs. She has been diagnosed with Ebstein’s anomaly with trivial TR, Bicuspid Aortic Valve with small Aortic Annulus and severe Subaortic narrowing with a sub-aortic membrane, abnormal Mitral Valve with mild MR, small ASD and VSD. When she was 4 days old she had surgery to repair severe Coarctation of the Aorta. The next surgery she will require is for her LVOT.

Her surgeon has talked about a modified Konno however, they have never experienced her combination of CHDs before. In your response to their consultation letter on 4th September 2015 you mentioned the possibility of a transaortic resection.

The results from her latest Echo a couple of weeks ago show her LVOT Peak Velocity at 3.34 m/s and Aortic Valve Diameter 0.80 cm. Previously in July it was 2.66 m/s and 0.77cm. For the July echo she was sleeping however for the latest echo she was awake.

Our questions are:
• Have you experienced the combination of Ebstein’s anomaly and severe subaortic narrowing before?
• If so, what type of surgery did you preform and what were the outcomes?
• What indicators do you use to time your intervention?

Thank you.

christinamm

Posted by @christinamm, Oct 19, 2016

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.

colleenyoung

Posted by @colleenyoung, Oct 19, 2016

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.

joannenz

Posted by @joannenz, Oct 19, 2016

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

colleenyoung

Posted by @colleenyoung, Oct 19, 2016

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

bellheartmom

Posted by @bellheartmom, Oct 20, 2016

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.

Posted by @Margaret_Marie, Oct 28, 2016

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

Posted by @hannahfgibson, Oct 20, 2016

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.

Posted by @Margaret_Marie, Oct 28, 2016

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

Posted by @goodgrief16, Oct 20, 2016

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.

BeccaT09 likes this

Posted by @Margaret_Marie, Oct 28, 2016

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

Posted by @sascha2432, Oct 20, 2016

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?

Posted by @Margaret_Marie, Oct 28, 2016

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.

christinamm

Posted by @christinamm, Oct 20, 2016

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.

colleenyoung

Posted by @colleenyoung, Oct 20, 2016

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.

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