February 2010

Heart Center Facebook Chat Transcripts

On February 9, 2010, cardiologists from the Heart Center at Arkansas Children's Hospital answered questions from parents about congenital heart defects in a live chat on the ACH Facebook page (www.facebook.com/arkansaschildrenshospital). See a recap of the questions posed by parents and the answers provided by three cardiologists from the ACH Heart Center: Dr. Paul Seib, Dr. Robert Jaquiss and Mary McDaniel.

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Q: My question is in response to a lecture Dr. James Jaggers of Duke presented this past July entitled "Neurologic Outcomes in Kids with Congenital Heart Disease.” Max was born with TOF, had his repair at 5 weeks (May 10/2006 by Dr. Imamura). My question, what is your experience with neurological problems with kids with CHD? Our son has experienced developemental delays (receives both speech and ...physical therapy). Max is enrolled at Easter Seals here in LR and is getting excellent therapy and care. Thank you Arkansas Children’s Hospital! Max’s cardio health is great! No more surgeries for the immediate future! No physical restrictions either. He is a happy, vibrant, young boy – who can’t talk! Melissa McCurdy Mom of Max McCurdy, ACH success story
A: This is Dr. Seib and Dr. Jaquiss responding.

Unfortunately, children with congenital heart disease who require surgery, particularly early in life, may have neurologic problems which become apparent later. The most important thing for these children is to identify the problems and intervene as early as possible. We are not sure what causes the problems in most children, just as we are not sure what causes heart problems in most children.

What you are doing with the Easter Seals program and early intervention gives Max his best chance to maximize his potential.
Q: What do you recommend when it comes to suggestions about using growth hormone treatment for short stature? We're rather nervous about going in this direction, but at age 7, Josh is about the size of a kindergartner and only 38 pounds. He's growing on his own curve, but is still below the charts. We're happy just waiting to see what happens, but wonder if we should consider going with the injections. Joel and I really like to hear your take on this.
A: My short answer is that I don’t know about growth hormone in kids with congenital heart disease. It has been used in children with Turner’s Syndrome, with what sounds like encouraging results. If his cardiologist at CHW is in favor has no objection, I think it would be very reasonable to try, under the supervision of a pediatric endocrinologist.
Q: Dr. Jake, you did 3 surgeries for us in 2007 and 2008 - Allison and Arley. Allison is 12, about to be 13. PA w/IVS, and you implanted a prosthetic valve for her in March 2008. What advice would you offer her, in regards to dietary guidelines and healthy behaviours in her teenage years, to maintain the health of her heart and this valve
A: This is Dr. Jaquiss responding. There is no specific advice that I would give except the usual heart-healthy guidelines – low fat, high complex carbohydrate diet.

And as for behaviors, you can tell Allison and Arley that their hearts will be healthiest if they listen to the their mother and do what she says (trust me, I’m a doctor). Take care!
Q: With HLHS patients...you have the inital 3 heart surgeries to correct the problem. What would have to be done in the future if anything. It seems as though we were told in 10-15 yrs down the road his heart might get tired from one side doing what two sides should be doing.If that problem happened today the only resoulution would be a heart transplant. Do you think there will be other options in the future?
A: This is Dr. Jaquiss again.

At present, for a youngster with HLHS whose heart is “tiring out”, the only option is transplant. I am hopeful that we will soon have a mechanical heart which is practical (low complication rate with good durability), but unfortunately we are not there yet.

In older adults, there is presently a pump known as a ventricular assist device (VAD for short), which helps, but does not completely replace the function of the “tiring heart”. This approach is called “destination therapy”, to indicate that the pump itself is the solution as opposed to older type pumps which were considered temporary solutions until transplantation is possible.

It may be that, rather than transplantation or mechanical heart, we will someday apply a VAD as destination therapy in children
Q: What differs from HLHS,SVT,AND ASD (what my son had)?
A: This is Dr. Jake. I’m glad to hear John Daniel is doing well. Nowadays, we try to have families with their kids as much as we can.

Your question about the differences between HLHS, SVT, and ASD is a fairly difficult one. What John Daniel had (an ASD) is a hole between the upper chambers of the heart. The treatment is conceptually simple: close the hole. HLHS represents severe underdevelopment of the entire left side of the heart, the side which normally pumps blood to the body. T

he treatment for HLHS is much more complicated and involves re-plumbing the entire circulatory system so the right side of the heart is positioned to pump blood to the lungs (its normal job) and to the body (a lot more work).

The treatment consists of three major heart operations, the first in the newborn period, the second at 3-6 months, and the third at about two years.

SVT is a condition whereby the heart rate speeds up dramatically, which may reduce the efficiency of the heart. In most cases, the treatment is medical, and for those kids who have it in the first year of life, as many of 90% will grow out of it. In very unusual cases, SVT may require a catheter treatment.
Q: I have a 20 y/o daughter. She has pulmonary valve stenosis and severe tricuspid valve regurgitation. She was seen 2 years ago and we come back this summer for a follow up. She had vavloplasty for the pulmonary valve at 18 months of age. My question is how will this effect her when she starts having children? We were told 2 years ago that there is a 50/50 chance that she will need surgery.
A: This is Dr. Jaquiss and Dr. Seib responding. She should not start to have children until her next evaluation. Her doctor will have a better sense of whether her prior heart problems will impact a pregnancy. It's a bit hard to say without more information. We appreciate your question.
Q: My sister had a catheter ablation last year to repair SVT. She had a stress test recently and they said she had a mild case of mitral valve prolapse. I was wondering if this was hereditary and if her child and siblings should be tested as well. Thank you!
A: This is Dr. Seib responding. Mitral valve prolapse (MVP) can occasionally run in families, but not commonly. MVP can be detected on physical exam or by an echo. I think other family members can be examined by their doctor to see if there is any evidence on physical exam. They do not all need to go have expensive echo exams.
Q: I have a 15 year old daughter with complex TOF, Pulmonary Insufficiency, Pulm. Artery hypoplasia and absent blood flow to R upper lung. She has a 12 year old homograft at the pulm artery. My question is... is it standard protocol to use homografts now or will it be replaced with something other than a cadaver material? Thanks. Carla Pearson (Arlington TX)
A: Hi Carla. Thanks for your question. This is Dr. Jaquiss responding.

The choice of what type of valve is used in surgery of the type that your daughter had is fairly complex. Homografts are still a very reasonable choice, particularly in smaller children. When children are older than two or three years, the range of alternatives increases significantly. For example, we sometimes implant valves constructed from a pig’s heart valve or from tissue from a cow’s heart. In other cases we use valves made from the vein in a cow’s neck. And in other cases we actually handmake valves from two kinds of Gore Tex material. My partner, Dr. Imamura, has developed a remarkable valve made of Gore Tex which we have implanted in several children with very good early results.

Still in the realm of science fiction, but coming soon we hope, is a valve “grown” in a laboratory made of the patient’s own tissue.

And finally, I should point out that in some cases, heart valves like your daughter's can be replaced without surgery at all, in the catheterization laboratory.
Q: I have a daughter who will be one Thursday and she was born with TOF! She had open heart surgery when she was one month and I am thankful for the staff at ACH! My question: Is there anything that we can do that will help prolong her next surgery? I was told that less caffiene could help because caffiene tends to speed up the heart rate which causes the heart to work harder! is this true?
A: Thanks for writing in, Christina. It sounds like your daughter is active enough that she doesn't need caffeine, but limiting caffeine won't have any effect on if or when another surgery is needed.

It would be more important to avoid obesity, encourage exercise, and avoid smoking. It will be determined over the course of her follow-up visits whether another surgery is needed. -- Dr. Seib and Dr. Jaquiss
Q: my 13 year old son has svt he had the surgery and i did not work. will it hurt him if we do not do the surgery again? he is not on meds and his "eposides" dont last very long he is able to stop them with the exercises.
A: This is Dr. Seib responding. Though it is successful more than 90% of the time, sometimes the catheter ablation is not completely successful.

While it can be repeated, it may not be necessary if the risk would be high, that is the risk of needing a pacemaker, and the episodes are easily controlled with vagal maneuvers ("exercises") or medication.
Q: I'm the one that had the Coumadin question, just thought since he had a gortex tube sort of thing placed in with the last surgery to connect the vena cava to the pulmonary artery that the coumadin would be a lifelong medicine to reduce the chance of "clots" to the gortex .
A: We are most concerned about clots in Gore-Tex tubes in the short to intermediate term after surgery. After a few months, we believe the tube becomes lined with the body’s own tissue and the risk of clot decreases.
Q: Hi, My son had an AVSD repair done in June this year at Children's hospital of Pittsburgh. He is left with mitral valve reg. as well as the bicuspid aortic valve that is not repaired. I'm wondering if you could tell me if the bicuspid aortic valve is likely to cause problems in the future? Or the mitral valve reg.
A: Thanks for writing in, Andrea. This is Dr. Seib responding. Every child who has repair of AVSD requires long-term followup after surgery for just such problems. The bicuspid aortic valve could become narrowed or leak over time and need repair or replacement at some point. That might not be for decades.

Similarly, most patients who have that operation have some degree of mitral regurgitation and most don't need another operation to treat that though a small percentage may. Best regards.
Q: If I have one child with a heart defect (coarcation of the aorta), what is the chance my next child will have a defect?
A: This is Dr. Seib responding.

The usual risk for congenital heart disease is roughly one in a hundred. Once you have a child with a defect, the recurrence risk increases, and for coarctation is between 6-10 in 100. Thus, the risk is 6-10x normal, but the chances are still >90% that the next child will have a normal heart. You should have a fetal echocardiogram between 17-22 weeks gestation.
Q: I have been hearing a lot about the ability to catch CHD's by having the hospital do a pulse-ox on your newborn--yet my preemie was in the NICU (different hospital) for 9 days hooked up to both heart/oxygen monitors--so is his (WPW) just one of the defects that can't be detected with pulse-ox check? Or could it have been because his WPW had not presented itself yet the reason that his o2 levels seemed fine?
A: Hi Marcia. We appreciate your question. WPW is indeed one of the heart defects which cannot be detected with pulse oximetry. For WPW, and ECG would be the test to detect the condition.
Q: What do you think of the new study relating heart defects to certain medications taken shortly before conception or during the pregnancy. I know this happened to me 44 years ago. The drug I took was Furdantin.
A: This is Dr. Jaquiss and Dr. Seib responding.

It is always difficult to know whether a medication which once seemed safe will eventually be shown not to be. The best advice is for women who know they are pregnant not to take any medication without first checking with their obstetrician.

And for women who may become pregnant or who are trying, consultation with an obstetrician would be wise.
Q: Hi, I would like to know how common WPW is in infants?
A: This is Dr. Seib. Thanks for your question. The answer is that it's not a common problem, and while it can cause rapid heart rates, it does not do so in everyone. Of those that have rapid heart rates in the first year of life it goes away in about 90 percent of patients. Some patients require long-term treatment with medication or may undergo a special heart catherization to get rid of the rhythm problem.
Q: I understand that because she has been seen at ACH since she was 18 months of age and is now 20, that she can continue to be a pt at ACH. But she feels a little awkard sitting in the waiting room filled with little kids. If we chose to go outside of ACH for further follow up and possible treatment, who would you recommend?
A: Your daughter can still come to ACH. We won't treat her like a child, or if she prefers, we have an Adult Congenital disease clinic held here in town at an adult cardiology office. Please call our office to schedule an appointment in that clinic which is staffed by Dr. Bob Morrow, chief of Pediatric Cardiology.
Q: My son Nathan, who is 9 has a question for Dr. Seib. He was born with PA/IVS and has had his Fontan. Hi Dr. Seib. This is Nathan. I wanted to know if I will need more surgeries later? Thank you.
A: Nathan! Great to hear from you. This is Dr. Seib. I am glad you stopped playing video games long enough to post. I don't think you will need any more surgeries. I think that 3 operations in your short life are enough! Look forward to seeing you in clinic. Be sure to play outside once in a while!
Q: Dr Jake: in Refrence to the "tiring out" of the heart..is that something that you often see after that amount of time or is there a good chance that nothing may have to be done in the future?
A: For children with HLHS, or other children who have had the Fontan operation, the answer is that a tiring heart is something we do see. There is no particular time frame in which this occurs, and it can be fairly unpredictable. This is the reason you keep coming back for check-ups. I think it is likely that most Fontan patients will eventually require help (transplant, mechanical heart, or VAD), but we hope that for the majority of them this will not be necessary until many years into the future.
Q: Thank you for the information about the different types of valves that are being used in treatment of CHD. I am particularly interested in what you wrote about Pulm. Artery valves being replaced in the Cath. Lab. Not sure if my daughter would be a candidate for that as we are hoping to be able to open up the vessels to the R upper lung area (stents or grafts ) but I will take the information t...o Dr. Lam (Cooks FtWorth Childrens Hosp). She is scheduled for surgery July 13th at Cooks Hospital. Is this a new procedure in the Cath. Lab.? What questions should I take to the CV Surgeon? I have not heard that this could be an option? The homograft that we were told would only last approx. 5-7 years has served her well for 12 years. She is small (60 lbs) and is a competitive gymnast so she gets lots of exercise. We are seeing a decline in pulm. function thus the appointment with the surgeon. Thanks so much. Happy Congenital Heart Defect Month to ACH.
A: This is Dr. Jaquiss responding. There is a valve which is made of a bovine jugular vein mounted on a metal stent which can be delivered by catheter into the pulmonary position. The valve is called a Melody valve and is manufactured by the Medtronic corporation. It has recently been approved by the FDA, with certain restrictions about how and in whom it is implanted. I’d suggest that you speak to your cardiologist and cardiac surgeon to ask them specifically about your daughter, but she may well be a candidate for this new valve. I must hasten to say that the long-term results of the valve are not yet available, so it’s a bit early to know how long we can expect the Melody to last.
Q: My husband had a pig valve placed 10 years ago. What symptoms will show when it needs to be replaced?
A: This is Dr. Seib responding.

Most often we can tell when the valve needs to be replaced from our evaluations at the time of clinic visits and from the echocardiogram. We can detect problems before symptoms occur, but the most common symptom would be a change in exercise tolerance, palpitations or swelling. Your husband's cardiologist is keeping a watch for these things.
Q: My question is that my son is almost 6 months old and he has two holes in his heart. Is there anything that he shouldn't necessarily do.Like is there certain activities he shouldn't do or is there certain meds he shouldn't take. Also he has a bad temper and he will literally hold his breath and turn a redish blue. When I was told this it was new news to me and I was shocked and not prepared to ask questions.Thanks so much!!!!
A: This is Dr. Jaquiss. Your son can do anything he wants, within usual common sense guidelines. (If you can figure out a way to restrict the activity of little boys or girls, please let us know – it’s a question we get all the time.) Do not worry about his temper.
Q: We LOVE Dr. Jake! My grand-son who will be 4 yr old next month had the 3 surgeries for "HLHS" and has done great. My question is will he have to be on Coumadin forever? He's pretty good with the frequent INR checks but it would be nice if he didn't have to go thru that. He's also on baby ASA. Thanks again for all the life-saving things you guys do at ACH!!!!
A: Hi Judy. Thanks for writing in. Your grandson will not need to be on Coumadin forever, and should be near the age where his cardiologist will stop the medication.

On his next heart doctor visit, we'd encourage you to ask the same question. The honest answer is we don't know how long is appropriate. But forever is too long.
Q: Thank you both (and the entire ACH Cardio staff) for all that you do. My wife commented earlier about our son with TOF. We know that additional surgeries will be required as he grows - 10 + years down the road. The TOF repair that Michi did probably would have been considered cutting edge 10-15 years prior. My question is - are you seeing any advancements in the field (either that you all are working on - or elsewhere in the field) that are exciting to you? That may change how surgeries like Max's may be treated in the future? Get out your crystal ball for a minute...
A: Hi Michael. It's good to hear from you. This is Dr. Jaquiss.

I usually use my crystal ball to investigate my daughters’ boy friends, but....

I think that tetralogy of Fallot may eventually be one of the conditions amenable to intervention before birth with highly specialized catheter techniques, although this is far from certain.

In the more conventional realm, we are getting better at taking care of the smallest babies before and after their heart surgery. In particular regard to TOF patients, the issue of creating or fashioning a valve that will (a) grow, (b) not leak, and also not leak is always going to be with us in some form or other.

For now, we are concentrating on safe surgery early on, with pushing the need for second surgeries (if any) as far out into the future as possible, perhaps in a way that Dr. Seib can do the second procedure, if one is needed, in the cath lab.
Q: My son Daniel Taylor was born with critical aortic stenosis and had a Ross-Konno procedure.. and had his mitral valve replaced. Just wondering how hopeful you both feel about the heart valves being grown from a person's own tissue. Daniel will need his valves replaced again in about 5-6 years. Is this something we may benefit from by then? Thanks for all you have done for my son.
A: Thanks for your question. Unfortunately for Daniel, I think the heart valve grown from a patient’s own tissue is still probably at least ten years away, especially for the mitral valve, which is the valve in the heart subjected to the highest stresses.

An earlier question from another person asked about growing an entire heart from a patient’s own tissues, and that is likely many, many decades away. I think for that sort of need, we may be closer to developing an artificial (mechanical) heart.
Q: Hi Dr. Seib! I hope you remember me and my daughter, Malea. Don't want to take up valuable space on this important topic. Just wanted to touch base with you. Malea's time on this earth was made better because of you. Thank you for everything.
A: Cyndee, So good to hear from you. I think of Malea and your family often and pray that you are all well. Malea was a wonderful young lady, and I was so proud of all she accomplished and the support you all gave her. -- Dr. Seib
Q: Hello Dr. Jake and Dr. Seib This is the parents of Jordan Smith who was flown in on October 20th and had the Ross procedure and more. Jordan went home on November 23rd and has had two checkups since. We just wanted to let you know that he is doing great, no complaints at all and he is back at school. We can't thank you enough for everything you did for him. All the doctors and nurses there were so good to us. We have not seen Doctor Eble since Jordan left but would like to make sure he knows how well he is doing.
A: Thanks for writing in. This is Dr. Jaquiss and Dr. Seib responding. So glad to hear that Jordan is doing great. We will let Dr Eble know how pleased you all are. Best regards!
Q: Hi Nicole -- This is Dr. Jaquiss and Dr. Seib. Weight is a factor in the timing for the 3rd surgery, and kids with HLHS do gain weight at different rates for a variety of reasons. Dr. Jaquiss will consider completion of the Fontan repair in children who weigh at least 22 lbs, though other factors may influence timing such as the size of the pulmonary arteries. When you see your cardiologist at your next visit, please ask about when the best time for Karson's surgery will be.
A: Kids who are cyanotic or “blue” do have more trouble with their teeth. They need to take good care of their teeth because they’re at risk of getting infections that could get in their blood streams and infect their heart.
Q: HI! My son Karson has HLHS. He has had the first 2 surgeries and has done great with the awesome care given him at ACH. My question is now that he is 3 should we be preparing for the next surgery. He only weighs about 25lbs and has not had but maybe a 1lb weight gain in 1 year. Will this delay his 3rd surgery? What signs should we be looking for that he is needing the next surgery? Dr. Best is our cardiologist and he is so great!!! I just can't think clearly when we come for visits. I have a ton of questions but won't hog the chat! LOL! All of the other babies we met and came close friends with when we were in the hospital are scheduled for their 3rd surgeries and that just adds to my worry of what we should be expecting.
A: Hi Nicole -- This is Dr. Jaquiss and Dr. Seib. Weight is a factor in the timing for the 3rd surgery, and kids with HLHS do gain weight at different rates for a variety of reasons.

Dr. Jaquiss will consider completion of the Fontan repair in children who weigh at least 22 lbs, though other factors may influence timing such as the size of the pulmonary arteries.

When you see your cardiologist at your next visit, please ask about when the best time for Karson's surgery will be.
Q: I just want to say Thank you to you Dr Jake. You did all 3 of my son's heart surgeries. Not sure if you remember (you do so many) but Garrett came in the ER to Dr Morrow when he was 2 months old. We had no clue he had HLHS! Thanks to you, Dr Morrow and your increduble staff for saving his life . We are truly blessed to have ACH close and will be forever greatful to you!
A: Hi Melissa. This is Dr. Jaquiss. I certainly remember Garrett and am glad to hear he’s doing well.
Q: In 2007 I had a child with HLHS and a Diaphragmatin hernia, when I was around 4 wks preg I received a MMr shot. I was wondering if there is any risk or research that shows MMR during preg increase risk of heart defects?
A: Thanks for your question. There's never been an association between the MMR vaccine and any congenital heart defects.
Q: Hi again Karen. This is Dr. Seib responding. At ACH, it is very uncommon for patients to need a pacemaker after surgery. At the time of surgery, wires may be attached to the heart in case a pacemaker is needed immediately after surgery but these are removed within a few days of surgery, and most times have not been used. Some patients can have a transient disturbance of the conduction that usually recovers within a few days.
A: Hello Ali. Thanks for your question. This is Dr. Jaquiss responding. Extracellular matrix can be used in a variety of applications for reconstruction, but its advantage over other types of materials has not been conclusively demonstrated. The condition your son has could be treated by either a Rastelli operation, or a more recently introduced procedure known as a Nikaidoh operation which has some theoretical advantages. In either case, a patch would be used to close the VSD and a second patch would likely be used for the ASD. Use of extracellular matrix for either patch would be conceivable, but certainly would be non-standard at this point.
Q: Why do so many children seem to have the sinus node cut during surgery and then having to have a pacemaker? How often is it that later on the conductivity returns?
A: This is Dr. Seib responding. At ACH, it is very uncommon for patients to need a pacemaker after surgery.

At the time of surgery, wires may be attached to the heart in case a pacemaker is needed immediately after surgery but these are removed within a few days of surgery, and most times have not been used.

Some patients can have a transient disturbance of the conduction that usually recovers within a few days.
Q: Hi! Our son, Cash, has HLHS and Dr. Jake has performed his first two surgeries. Even though Cash is doing great his cardiologist is suggesting we have his last surgery this summer due to his age (3 yrs). What tests and when should we have these scheduled to determine if Cash is ready for the Fontan? By the way, Cash is extremely active and continues to have a pulseox reading in the low 90's.
A: Hi Carol. This is Dr. Jaquiss responding.

Prior to his Fontan, Cash will need to have a cardiac catheterization to measure the pressures in his heart chambers and lung arteries, as well as to demonstrate the anatomy of his lung artery.

We’ll also need a recent (within 3 months or so) echocardiogram. In general, we try to wait until children are at least 22 pounds. We’d be happy to do his pre-op stuff here, but it certainly can be done in Oklahoma if that’s more convenient.

Please give our office a call (501-364-5858) if you’d like us to make the arrangements.
Q: Dr. Seib, you might not remember this, but you were the attending when Kale was brought into the ER in severe SVT and he weighed five pounds (Nov 5, 2007). The code team was called to the room just in case and ya'll had to shock him twice to get the rate down because the meds were working fast enough. I had a friend ask me if Kale was in heart failure at that time because his heart rate was that... high...was he? Or does your heart have to stop or slowly decline to be considered in heart failure? I realize this might sound like an odd question, but I didn't know how to answer it or exactly what defines heart failure. I want to be able to tell him whole story someday if he asks, so this would be helpful to know.
A: Hi Marcia. This is Dr. Seib responding.

At the time you came to the ER, Kale's heart was not working normally due to the SVT, but I would not say that he fit the usual description of "heart failure," which is usually due to a primary problem with the heart rather than due to the tachycardia, which thankfully, was more easily correctable.
Q: THANK YOU ARKANSAS CHILDREN'S HOSPITAL; and a 'SPECIAL' THANKS to Dr. Renee Bornemier(my son's cardiologist) and all the staff within the Cardiology Clinic/Unit. He was born with a congenital heart defect (inoperative) and wasn't supposed to survive 48 hrs after birth. A year ago (Feb 5, 2009) he was diagnosed with congestive heart failure and didn't know what was ahead. Today he's 15 yrs old, doing well, and a honor student. God still answers prayers --- God is good! Again THANK YOU -- we are so blessed to have you all here in the State of Arkansas.
A: Hi Carla. We're so glad that your son is doing well. We love to hear progress reports on our patients. Best of luck to your family!
Q: I dont have a question. Just many thanks. To all of you Mallory had her surgery 12 days ago and has been home 5 days and doing great, and getting back to herself! ACH CV ROCKS!
A: Good to hear from you, Mandi. We hope that Mallory continues to do well! We're glad to hear a progress report. Thanks for checking in!

Arkansas Children's Hospital
1 Children's Way
Little Rock, AR 72202-3591

Call: 501-364-1100