February 2010

Heart Center Facebook Chat Transcripts

On April 5, 2012, 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. See a recap of the questions posed by parents and the answers provided by three cardiologists from the ACH Heart Center: Drs. Renee Bornemeier, Paul Seib, and Matthew O'Connor.

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Q: How often should I have my son checked for a slight heart murmur? The last time was maybe 2 to 3 years ago he doesnt complain about any pain shortness or breathe etc he overall is a healthy 14 yr old boy.
A: This is Dr. Bornemeier. It depends on what causes the heart murmur. If you're not sure, you should see your primary care physician and ask about a referral. Dr. Seib adds that if it's an innocent heart murmur, it's possible that it only needs to be followed by a primary care physician. The time table for cases where a murmur is caused by a structural heart defect (example: a hole in the heart), should be decided by a cardiologist.
Q: My 17 year old daughter was recently diagnosed with Wolff Parkinson White Syndrome. They are doing testing to see whether she needs an ablation procedure. Is this a dangerous procedure and will it fix the issue where she won't have any more problems with heart racing spells as opposed to just being on medication?
A: Ablation is generally a very safe procedure with a high success rate -- greater than 95 percent for most arrthymias. In most cases, it is more effective than medications, but as always follow up with a pediatric cardiologist. (This is Dr. O'Connor responding.)
Q: My daughter is scheduled to have the ross procedure, i went on line and watched a video of the procedure, yikes wrong thing to do, now i am very scared, is this the best procedure for aortic insuficiany , she had a repair last june that did not hold and she is not a canadate for the mechanical valve because of future spinal fusion.
A: This is Dr. Seib responding. The reason surgeons sometimes want to avoid a mechanical valve is that it requires long-term treatment with blood thinners. A Ross procedure uses the patient's own pulmonary valve to replace the aortic valve. This valve can grow and does not require blood thinners. Another option is a tissue valve, which may not last as long as a mechanical valve (which means it will have to be replaced at some point) but also won't require blood thinners. You can discuss these options with your child's cardiologist and heart surgeon.
Q: My 7 year old had a VSD diagnosed after birth. It has since closed, but she has mild pulmonary valve stenosis, as well as seizure disorder, and Asperger's syndrome. When she gets over-stimulated, or cries for a long period of time, she has a seizure. Could this be due to the pulmonary valve stenosis?
A: This is Dr. O'Connor. It's difficult to say for sure, but typically mild pulmonary valve stenosis does not cause seizures. You should definitely discuss with your daughter's cardiologist, however.
Q: Hi Dr Seib this Amber Wingfield's mom. It has been 17 years since Amber had her mechanical valve for her aortic stenosis. How long do they usually go before having to have them replaced? Amber will be 28 in August and is doing great. Still just a worried mom.
A: This is Dr. Seib. It is not uncommon for these types of valves to last for 20 years or longer. The reason we have regular checkups, though, is to make sure they are functioning welll. It also very important that she keep taking her anticoagulant medication. Please say hello to Amber.
Q: Hello This little lady right here < just celebrated her 8th birthday thanks to all of you and many others! Lauren was born with HLHS and will need a cath at 50 lbs to check on a stent in her coarc repair. Dr. Seib-I was wondering if you go in at this stage knowing it will need replaced or if there are times it's still fine. I know there are obvious physical signs if something needs to be done, but I've never asked how long stents typically last. She's had one in her left pulmonary artery since age 15 months and this one in her aorta since age 4. And, after the cath at 50 lbs (I know they're all different) what is the usual length of time until they need another cath?
A: This is Dr. Seib. Glad to hear Lauren is doing well. We never have to take the stents out, only dilate them and make them bigger. When we have to that depends on her growth and the growth of her blood vessels. Doing a heart cath when she weighs 50 pounds sounds very reasonable, but the timing could be altered by something we find on her checkups. I know Dr. Moss is watching this very closely. Warm regards.
Q: My only question is do you all know how wonderful you are??? if not i am here to tell you that yall are the BEST and have taken excellent care of my grandson Kameren Forrester and due to yall always taking the time and throughly explaining Kamerens condition and treatments i have no questions only praise to you all.....GOD BLESS ACH and all the Drs, Nurses & Staff!
A: Thank you so much from all of the doctors and staff here tonight. We appreciate your kind comments and hope Kameren is doing well.
Q: My child is 4 yr HLHS and a patient of Dr. Eble's. Lawson has started tee ball and has been doing amazing since his Fontan in Oct '10. Lawson had a cath done in feb. where we discovered that his pulmonary artery has became narrow (again) problem is that is is right up against his gortex tube that was place during the Fontan. He has been experiencing "blue lips" again. My concern is that he is currently playing baseball. While now the weather is cooler he breaths fine but what do I need to be looking for (warning signs) that something is wrong. And do I need to keep him in out of the heat this summer? His sats run 93% right now, however he sleeps 12+ hours a day.
A: This is Dr. Seib. It is great that Lawson is playing tee ball. It's always important for patients such as Lawson to remain well-hydrated when the weather gets hot. He needs to be allowed to set his own limits and rest if he gets tiired. But he should enjoy his sports activities. His doctor will check with you about his exercise tolerance and monitor his condition. We want to detect any problems before you see a warning sign. Send us a picture of him playing.
Q: On average, how many kids come to ACH with heart issues every year?
A: This answer is coming from Drs. Bornemeier and Seib. Each year we see about 8,000 patients in clinic visits and we perform 600 heart surgeries. These range from treatment of simple murmurs to complex surgeries in children who need heart transplants.
Q: I am interested in any information you may have about Trisomy 18 and when heart surgery is typically performed (if at all) for the corrections needed to the heart.
A: This is Dr. O'Connor responding. There is a very high instance of heart defects with Trisomy 18 -- upwards of 90 percent of patients. Deciding to do surgery (or not to do surgery) is difficult, but it depends on the specifics of each case. Sometimes non-cardiac problems influence this decision, as well.
Q: Good evening. Our son was born with TGA, ASD, VSD, pulmonary stenosis and a right arch. He had the Rastelii last March at age 3. We are expecting our second child later this summer which shows free of defects. Would it be advantageous to consider cord blood banking? Could it possibly be useful to our son in the future?
A: Thanks for your question Ali. This is Dr. Seib and O'Connor answering. Cord blood banking might be advantageous in some areas, but at this time it's not routinely used for cardiovascular procedures. It would be more typically used for cases of childhood cancer and bone marrow transplants.
Q: My son was born with SVT. He hasn't been tachycardic since 3 days old and he is almost 6. Is there a chance the tachycardia could become a problem as he grows?
A: This is Drs. Seib and Bornemeier. In cases of neonatal SVT many do not tend to recur after the first year, but over the course of a patient's lifetime, there is possibly about a 30 percent chance of this happening again. If there is recurrence after a year of age, the arrhythmia might require ongoing care ranging from medications to procedures to keep it controlled.
Q: Is Dr. Best an ach heart dr or does he work at the Texarkana, Ar medical center. My son saw him in texarkana for two holes n his heart I would rather come to Ach since we use two other drs there for other problems.
A: Ashlyn, Dr. Best is one of our cardiologists. ACH Heart Center physicians rotate at the regional clinics. Your son may have seen Dr. Best at the clinic in Texarkana, but he also sees patients in regular clinic on the ACH campus.
Q: Last time my son went for a check up he had an irregular heartbeat. Is it normal for him to have one or should I have it check out again? He is a 3 years old n very active.
A: This is Dr. Bornemeier responding. Some children have variation in their heart rate that occurs as they breathe, and that is a normal finding. But there are also abnormal heart beats that can cause variation in the heart rate -- like the heart "skips a beat" or has an "extra beat." It depends on which type of irregular heart beat a child has. Be sure to check with your pediatrician if you have concerns!
Q: In October of last year we discovered that our 3 year old son has PVCs. In the letter we received after his visit at Children's, we were told "no treatment required.". We are going back on the 17th of this month for his 6 month follow up visit and I'm just as nervous this time as I was with the previous visit. The ultrasound of his heart showed to physical defects and all his blood work came back normal as well. My question is this: How common is this issue, and is it something he could possibly grow out of? I'm scared to death that I will have to keep him from doing an activity he wants to do later in life because of this. I need some peace of mind.
A: Hi Laura. This is Drs. O'Connor and Seib. PVCs are very common and often go away with play and exercise. They usually do not require treatment. They typically do not require that a child restrict any normal activities. We'll look forward to seeing you soon!
Q: What is your Professional opinion on taking anti depressants during pregnancy? OBGYNs say it's fine and won't harm the baby , but then you see babies born with heart deflects and that is where they root the problem!
A: Jodi, this is Drs. Bornemeier and O'Connor responding. The most critical time in development of the heart is the first two months of pregnancy. Any medications taken during that time may affect the development of the heart. Once you are passed that critical time in gestation, the likelihood of medications affecting formation of the heart decreases. You should discuss with your primary care provider and make the best decision for you and your unborn baby.
Q: I am starting to work out at a gym cause my heart doctor told me to lose some weight to stay healthy and I was wondering am I allowed to lift weights or just do cardio work and if I can lift how much is a good weight to not strain my heart? And I had two open heart surgerys the last being of 2009 in June.
A: This is Dr. Seib. In general, heart surgery patients can do some weight lifting, but should focus on increasing the number of repetitions rather than the pounds of weights lifted. Any weight you can lift 25 times without straining is probably not too much. Do check with your pediatric cardiologist, though.
Q: My now 5 year old daughter had emergency open heart surgery at 7 weeks old to remove a golf-ball sized atrial fibroma. Thanks so much to ACH! For about the past year, at the base of her scar I've noticed some very small blackish "dots" just under the skin. I think I remember something about the possibility of the wires one day poking through (?). Do you think that's what this sounds like? (My daughter also has Williams syndrome and mild SVAS.) And if so, does it need to be fixed and what's involved with that? (We have an appt to see Dr. Eble this summer.) Thank you! And we love you Dr. Bornemeier!!
A: This is Dr. Bornemeier. Typically wires do not appear to be black under the skin. It's possible something like this would be a tiny piece of retained suture. If this area looks infected or you think Allie is uncomfortable in any way, call the office and we can arrange to see her. Thanks for posting!
Q: My daughter had a pacemaker placement at 3 mnths old. Due to av block. Her pacemaker is in her abdomen, we have heard that the more activities she does (physical movement) the more chance the leads might reposition or possible detach from her heart. I assumed that since there was extra length for growing that it wouldnt be a problem with the leads. Is this true? She is 5 now, rides horses and has participated in ballet, and we would like her to do other sports.
A: This is Dr. Bornemeier responding. Good question -- we typically try to have our pacemaker patients avoid activities in which they could take direct hit to the site of the pacemaker. The activities your daughter is currently participating in are not common activities where we see significant injuries or damage to the device. If at any time you have concerns, you could call in for a device check. Tackle football or a fall from the balance beam might be the types of activities we advise against.
Q: My son is 7, has (mild) BAV / Aortic Stenosis, coiled PDA and has had Strep throat 5 times since Jan. Unsure if it's worse to keep treating with antibiotics or have tonsillectomy. Strep scary bc of rheumatic fever/valve damage but tonsillectomy has risks too. Considering calling Dr. Sachdeva to see if appropriate for her to give an opinion. Curious of your thoughts.
A: Sorry to heart your son has had a rough winter/spring. his is Dr. O'Connor responding. Recurrent strep is very different from rheumatic fever. It sounds like he's being treated appropriately for strep infections. Would definitely recommend giving Dr. Sachdeva a call, however.
Q: Thank you for answering our questions! I have 3 questions, one for each of my children. 1. My son was born 13 weeks premature and had a PSD there at ACH when he was one week old. Does this clipped vessel keep him from having MRIs or Xrays and can any complications arise later?
A: This is Dr. O'Connor. We're not sure what a PSD is, but we're assuming you mean a PDA. Generally a PDA clip does not prevent getting an MRI. However, it is important to let anybody who would be performing an MRI know that this has been done so they can plan the study appropriately. There is no effect on X-rays.
Q: My 1 year old daughter was born 5 weeks premature. She had a very faint murmur after birth that only some doctors could hear. My 5 month old has a very faint murmer also that only a couple doctors could hear and her echo showed her to have ASD. Should my 1 year old be tested also to see if she has a defect?
A: This is Dr. O'Connor. Sometimes, heart defects do run in families. If your 1 year old has a heart murmur and her pediatrician is uncertain as to what it is caused by, it would be very reasonable to refer to a cardiologist. You should discuss this with your child's pediatrician.
Q: I took one 40 mg dose of Celexa prescribed to me during pregnancy and had horrible, awful side effects so I was taken off of it. My child was born with ASD. Did taking this dose that make me sick cause this defect?
A: Thank you for your question, but based on only one dose of medication there is no way to know whether it had any effect on your child's heart defect.
Q: My son is 9 months old and followed by ACH for svt he has breakthrough episodes and is now on digoxin 0.5 mg twice a day and propanolol three times a day he has laryngomalasia and severe gerd does svt cause any severe growth issues as he is 14 lbs 3 oz and 26 inches long.
A: This is Dr. Bornemeier. SVT should not affect growth, and the medications used to treat it do not affect growth either.
Q: I don't have a question-just wanted to say I love ACH and the cardiologists. My son Logan Beck turned 17 today thanks to the wonderful care he has received from you guys. Thanks for being awesome.
A: Happy birthday to Logan and thank you for posting!
Q: My son is 9 months old and has VSD and ASD is this a common problem? Do they usually grow out of it?
A: This is Dr. O'Connor. ASDs and VSDs come in many different sizes and forms. Some close by themselves without any treatment at all, while some require medications, and some may require surgery. You may need to discuss with your child's pediatrician or cardiologist for details regarding your child's specific ASD and VSD.
Q: My son had to heart surgery when he was born do to his pulmonary valve wasnt open. And 25 days later had stomach surgery. My question is... Could the fact that my husband has been taking the same high blood pressure med since he was 14 have anything to do with what was wrong with our son?
A: This is Dr. Bornemeier. Thank you for your question. There are many things about medications and other environmental factors that may influence the developing heart. At this time, I am not aware of any studies that show a direct cause and effect relationship between this medication and your child's heart condition. If you have more questions, I would start with your child's primary care physician.
Q: First of all I would like to say I love ACH and the staff there! My son had his third step of heart surgery june of last year and the dr. said he would eventually need a heart transplant,between the ages of 10 and 15...how will I know when is the time to put him on the donors list? I mean,I don't want to wait too long or til its too late. He has HLHS.
A: This is Dr. Seib. Although it is true that some children with HLHS do require a heart transplant, many live into their 20s without needing a heart transplant. This is why it is important for your son to keep his regular follow up appointments with his cardiologist to make sure his heart is functioning well.
Q: My son has TGA and has a leaky aortic valve. My question is will it heal on its own, or do they get worse and have to have corrective surgery or some procedure?
A: This is a good question. It is normal for there to be some leakage of the aortic valve after the arterial switch operation for TGA. If the leakage is severe, it may require surgery, but less severe forms of leakage may be very well tolerated without surgery for many years. This is one of the many things that your child's cardiologist looks at during regular checkups.
Q: My daughter was born with Scimitar Syndrome 10 years ago. She had heart and lung surgery there 6 years ago in May performed by Dr. Jaquiss. She is now living a healthy and active life and I am forever grateful for Dr. Morrow , Jaquiss and the cardiology staff at Children's. I just want to say thank you to all of you for the miraculous care of my daughter!. Not a day goes by that I don't thank God for His miraculous healing upon her and thank Him for her cardiologist. So thank you so much Children's for all that you do!!!! My daughter has coils to her right lung that helped repair the pulmonary sequestration, so she now only has a partial lung. I do notice she still runs out of breath when running a lot. Is this normal and will it get better as she runs more? Thank you.
A: This is Dr. Bornemeier. Typically, the amount of lung that is present in the sequestration should not be enough to affect her overall lung function and ability to exercise. If you are concerned about her breathing, you should discuss this with her primary care physician who could then make further assessments of her respiratory status.
Q: I am 29 yrs old and have Congenital Supravalvular Aortic Stenosis. 3 Open heart surgeries, with the last surgery nearly 20yrs ago replacing most of aorta. My chest is always swollen and when the weather changes and rains, I can't even get out of bed. Not to mention, all the wires that have came undone. Do you have any suggestions on what to do for swollen chest and could the wires just hanging around in there hurt anything? Thanks
A: This is Dr. Seib. I'm sorry for your symptoms. In patients with wires, sometimes they can cause pain and discomfort when they have been present for some time. You should discuss these symptoms with your cardiologist to determine if there are any treatment options.
Q: Hello. My son had a VSD and an ASD. He had surgery when he was six months old to fix these issues. He also has pulmonary valve stenosis and still, at 2 years old now, has a murmur. My question is will this affect anything for him in the future? Will his murmur ever go away? Will he require another surgery? Thanks!
A: This is Dr. O'Connor and Seib. It is actually common for children who have had surgery to have murmurs following surgery. You should check with your child's cardiologist to see if this murmur represents a problem or not.
Q: I want to say thank you to everyone who has posted positive comments. I just found out last month that my 7 year old daughter has an ASD. DR. Sachdeva ordered an MRI on her heart and we are getting ready for open heart surgery in June. You all have made me thankful we have chosen Children's to repair my little angel's broken heart as she calls it. She was also born with a cleft palate and the always wonderful Dr Buckmiller has seen us through all of those surgeries. Thank you, Children's for everything you do!!!!!
A: Thank you for your kind words, Mandy! We appreciate your trust in the care at ACH.
Q: Does children born with aortic stenosis live a normal life span?
A: Thanks for your question. This is Dr. Bornemeier. We see aortic valve abnormalities in approximately 5-8 percent of chldren with heart defects. But aortic valve stenosis can vary in how much stenosis is present. You can have some valves that are normal but have no stenosis and you can have some valves that are so severely obstructed that they have to be emergently dealt with at the time the baby is born. Most children with aortic stenosis tend to have normal life spans but depending on how the aortic valve performs over time may affect whether procedures or surgical intervention need to be performed.
Q: My 3 year old daughter has TOF and Pulmonary Atresia. She had a BT shunt at 6 days old and a repair with a "Michi valve" at 6 months. She will start pre-school in the fall and my question is how concerned should I be with her being exposed to all the illnesses that usually go around in pre-k? Should I treat her just like a normal child, or should I take her to the doctor every time she fever to make sure its nothing serious?
A: This is Dr. O'Connor responding. This is a very normal concern that many parents of children with heart disease have. Children with heart disease should go to their primary care pediatricians for the same concerns any child would: high, prolonged fevers, inability to drink fluids and dehydration among them.
Q: Just want to say Thank You to the Drs and Staff at the Heart Clinic. When we found out that my son a ASD and VSD, we truly thought we where the only parents going through this. ACH has been great to my son and us parents. It was pretty amazing to see a 2 yr old kid have surgery on a Tues and was up and playing on Fri and was able to go home on Sat. And he is as proud as he can be of his boo. If any parents would like to talk to another parent that has gone through the process of surgery, we would be more than happy to talk to you.
A: Hi Dr. Elrod, this is Dr. Bornemeier. Thank you so much for your willingness to support other famiiles. Have a good night!

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