Heart Surgery in Children
Archived Q&A and Reviews
My 5-year-old son is scheduled to have open heart surgery at Stanford in August. The surgery will be performed by Dr. Hanley. Any advice on how to prepare him would be greatly appreciated. Also, anyone got experience w/ Dr. Hanley or the hospital?
My children have not had heart surgery, but two of their little friends have. Two hints I got when my kids was in the OR for other needs... one - when you see your child in recovery, s/he will look swollen and puffy - this is normal and due to all the IV fluids they've gotten. As a result, there will soon be a lot of pee. The other thing - even if your kid is all stuck up with wires and monitors, there is no reason why you cannot climb into bed with him/her and wrap you arms around your baby. Do it. mama
I am from a different country, so I can't speak to Stanford or Dr Hanley, but I can speak first-hand to this experience. I had open heart surgery when I was 7 years old. I am now 31. I didn't know the full repercussions of my operation (ie: the risks of it) until I was about 17 or 18. My parents always stayed very positive with me. However, I think it's important for the child to know a bit about what to expect. The hospital I went to had a great pamphlet directed at children going in for heart surgery. I remember that it was written like a cartoon, though with real photographs, showing each stage of the process. That helped a lot! I think it's important to hear/read the stories of other children who have gone through it, and for the child to feel somewhat informed of the process, but also to feel safe and secure. I hope this helps. I'm happy for you to contact me if you would like to know more of my story. Please contact the moderators to get in touch with me if you think it would be helpful. Tess
This is a tiny suggestion, but the children's TV show ''Arthur'' has an episode ''Operation: DW'' in which the main character's four-year-old sister undergoes surgery. It gently details the process of her checking in, meeting lots of doctors, getting her blood drawn, answering questions, etc. in a way that might help familiarise him with what's going to happen to help quell anxiety. Good luck to you and your little boy. A sick child is always terribly hard, but just having the forethought and wisdom to consider this question is a great reminder that you have the strength to get through this. Anna
I have a 5-year-old daughter and can't imagine the stress and anxiety you must be feeling about your son's open heart surgery. I'm so sorry to read that your little one is undergoing something so scary. I have no experience with the doctor. As for your son, I wonder if there are books you could read to him about overcoming scary stuff (although I'm not sure you'd find anything about open heart surgery on such a young person). Showing him lots of love and reassuring him that he will be okay once he gets through it all is the only advice I can think of. May God be at your side during this difficult time. soleil
Dr. Hanley performed our son's open heart surgery nine years ago when our son was just 18 mos old, and i can't say enough good things about him. He had a very calming presence, and I felt much less nervous after our pre-operative consult. I don't know if you've met with him yet, but you will probably feel better after he addresses any concerns you have. Since our son was so young, there wasn't much to do in the way of preparing him beforehand. I was amazed, however, at how quickly he recovered. I think he was only in the hospital for 4 or 5 days and was up and wanting to run around as soon as we brought him home, which of course made us nervous. Our son's surgery was at children's hospital Oakland, so I can't comment on Stanford, but wanted to let you know how comfortable we were with dr. Hanley. Anon
I have a good friend who had a child in late June. Sadly he was born with two holes in his heart and my friend has learned that he will need to have open heart surgery soon. Her son is also not eating well and as you can imagine the parents are feeling frustrated and a little helpless. I was wondering if people can point me in the direction of any local support groups that the parents could attend or if you have experienced something similar with your own child and are willing to share your journey that could be helpful as well. The husband is reluctant to share or interact with folks but the wife is willing and probably needs to share to get an emotional relief. Any advice is much appreciated.
Our son was born with three heart defects, one which required surgery and two minor holes that closed on their own. As harrowing as the experience was at the time, he's now a healthy thriving almost three year old, who has no idea he was ever sick.
I would suggest to your friend, that as much as it is hard on us parents, for the surgeons involved in can almost be routine. The best words we heard in the hospital were from our sons neonatologists doing rounds in NICU, ''This is Liam, he's having heart surgery, a very simple case, you won't be getting to know him'' I'd be more than happy to talk to your friends, or send them pics of our boy, pre and post surgery and current. k
My little one is 4 months old and in 1 month will be admitted to Oakland Children's Hospital for Open Heart Surgery to close his VSD. We have been assured this is a major but simple surgery. We are worried about the surgery - the trauma to our little one, complications and of course how to manage our fears and the mental and emotional anguish. The Doctors and Staff at the Hospital have been amazing so far - but I would like to reach out to anyone who has undergone a similiar experience - to understand the emotions, experience and of course be reassured that all will be safe and smooth.
My grandson had a vsd and we spent 5 years watching it hoping he wouldn't have to have surgery, but then he did. I could barely stand the idea. I kept thinking about what was going to happen to him and I couldn't look at him because I felt like I was betraying him somehow. It broke my heart
The worst was the anguish. I would cry in the shower so no one could hear me. I wanted so bad for it to not happen. I would start to think about the surgery and I couldn't breathe and I kept trying to imagine it because I had this idea that I needed to get all my crying out (in the shower) so I could face my beautiful grandson with loving calm. I didn't want him to feel my anguish. Well it didn't work. I was getting worse and worse, not stronger or calmer. I could not get used to the idea. Finally my husband suggested I stop thinking about it. There's no point he said. So I tried the opposite - denial. I refused to think about what was going to happen. I went to all of his appointments with my daughter and was there to support her the whole way, knowing, but not thinking about it. It kept the anguish at bay. It was not easy, but I didn't think about it when I didn't have to and I refused to imagine what would happen to him. I watched movies if I had to at night. That worked. Denial can be helpful.
Aside from that the whole experience was as good as an experience like that can be. We were at Children's hospital. We waited together in the cafeteria during the surgery (about 14 members of the family) and the wait didn't feel so long. They are very good about pain control. They let us be with him until he fell asleep before the surgery and called us in as he was waking up after so he never had a minute without us. We were there, usually two or three of us, with him around the clock. He was in intensive care for three days after his surgery.
The worst part will be when you see him after the surgery. There will be so many tubes and things sticking out of him it is kind of shoking. I imagine it is worse if they are even smaller. But he got better by the hour and by the second day he didn't have any tubes. They get better so fast. It has been 5 years and I will never forget, but he has. We took lots of pictures for him and he looks at them sometimes.
In many ways this will be harder on you than on your baby, but hang in there. Healed heart.
I don't have any great advice, but I do know what you are going through. My daughter was diagnosed with an atrial septal defect at one year. We were told at the time that the cardiologists would keep an eye on the defect for a few years because there was a slight possibility it would close on its own. We had our yearly appointment in June, and it was determined that the ASD is too big to close on its own, and to irregularly shaped for the ''catheter procedure'' so she will need open heart surgery in a few years. The good news is that the defect isn't affecting her heart right now, but it may in the future.
The waiting is definitely the hardest part. I have learned to not let my mind wander into the ''what ifs'' and realize that there is an EXCELLENT chance that everything will be just fine. Heart surgeries in young kids (to close ASD's and VSD's) have statistically excellent results, and once the defect is closed, it is closed for life in most cases.
We live on the East Coast now, so the surgery will happen at Children's Hospital Boston, so I can't give any advice on Bay Area doctors.
If you woud like to email me directly to chat for support please feel free to ask the Moderator for my email. It would be nice to talk to someone who is going through what I am. I have looked for support groups to help families dealing with these issues in Vermont, and haven't had much success. Amy
Hello, Yesterday my 11 month old daughter was diagnosed with an atrial septal defect (small hole in the heart) by a cardiologist. Our primary care physician first detected a murmur at 10 months (he had not heard one before) and referred us to the cardiologist. It is likely that she will need intervention (the hole was seen on sonogram and is a couple of millimeters in size). The heart is functioning well, she is asymptomatic (no problems breathing, eating, blue skin etc.). The cardiologist had advised us to come back in one year to see if the hole has closed up, or if it is the same size or bigger. If the hole has not closed up she will require a catheter- based procedure to plug the hole, which I have been told is a permanent fix.
I would like to hear from parents/guardians/grandparents etc. who have been through this or similar diagnoses with their little ones. What were your experiences? Are there any on-line help groups that helped you through this? Waiting a year will be very difficult for us, and we are also trying to figure out how we will cope. I should add that my family has relocated from the Bay Area to Vermont and we will be dealing with local physicians so specifics about Bay Area hospitals and doctors are not needed. Thanks in advance! Amy
Hi. Our daughter was diagnosed with ASD at 6 months old (she's now 2 1/2) based on the discovery of a heart murmur by our regular pediatrician and a subsequent exam and echocardiogram by the UCSF cardiology dept. Hers is a medium-sized hole. They say there's a good chance it will close on its own, so we're keeping our fingers crossed for that. We have had annual cardiology check-ups and will go again when she turns 3. At that time, they'll do the laparoscopic surgery at UCSF if it hasn't closed. From my reading, my understanding is that many, many people (including several pro-athletes) live well with ASD (even though nowadays, surgery is recommended). This sounds odd, but if you're going to have a heart defect this is the one to get, as it is relatively easy to repair (outpatient surgery) and often heals itself. I cope by knowing that there is an enormous chance everything will be just fine and that in the grand scheme of things that she could have, this is pretty minor. (It helps for perspective's sake that my nephew has a very serious heart defect that has required open heart surgery, and though he'll likely need more surgery, he's doing really well and lives a very full life.)
I am pregnant with our second child now, and the OB had me go do a fetal echocardiogram based on our daughter's defect, and the baby doesn't have a defect.
BTW, I lived in New England for many years. If you do wind up having the surgery there, my advice would be to at least get a second opinion from Children's Hospital in Boston, even if you do the surgery in VT (Fletcher Allen?) or NH (Dartmouth-Hitchcock?) They are great. Same Boat Mama
Our daughter was diagnosed with ASD at age 3. She was in the middle of multiple rounds of surgery for a birth injury so we had to wait for 3 years to do the heart surgery.
Waiting was harder than I realized. Our relief was monumental when it was over, we had been unconsciously afraid for 3 years.
What helped was we had a really good surgeon who had never had trouble with this procedure. It made us feel confident. What also helped was getting lots of sleep before the procedure. We stayed up for 3 days with our daughter in the hospital, trying to hold her and be with her as much as possible.
Write if you want to talk further. Fred
My 17 yr old daughter was diagnosed with ventricular septal defect at birth (a hole between the lower chambers of the heart) at birth. It was 1/4''wide. We had Kaiser at the time. An x-ray was take when she was 3 days old and 4 months old. She was monitored by a pediatric cardiologist every few months and had EKGs done a couple of times in the first year and, as I recall, every year until she was about 4-5. At 4 yrs, she had an echocardiogram (ultrasound of the heart).
Same as your child, she had no apparent symptoms; the cardiologist said that as she got older no restrictions on her activity were needed. Only be aware if her lips turned blue! (lack of oxygen). The hole never got bigger and finally closed on its own when she turned 6.
The doctors said that the hole did not affect her in anyway. She's healthy now but very petite. Maybe it's a mother's intuition, but I think it did affect her growth. She did not nurse well during the first 4 months of her life and slept alot. (she is my 2nd child so I had experience). She would nurse for about 3 mins. then stop and sleep; this went on for 3-4 months. I mentioned this to her pediatrician, but she didn't think this had anything to do with her heart condition. I think that the act of nursing itself was tiring her out and that she couldn't physically maintain nursing because of the hole in her heart; the doctor told me to just keep trying to wake her to nurse! Plus, she did not gain much weight in the first year (she was 8lbs,12 oz when born, but weighed only 18 lbs. at one year). Because we are asian, the pediatrician said her weight can be attributed to our race and genetics (BTW, my sister is 5''10''). Now she is 5''3'' and weighs 96 lbs. But she is healthy.
So, don't know if this helps in anyway, but wanted to give you my experience. I look back now and think I should have questioned the doctors more and gotten a 2nd opinion. Should she have had surgery and would it have made a difference? I guess I'll never know.
Good luck and all the best to you and your baby. caring mom
Hi Amy- A have a happy story with a similar situation so if you're looking for encouragement - I have some! At age 3 my son was diagnosed with a subaortic membrane that was asymptomatic and too small to require surgery when it was detected. He has a great pediatrician and I am forever grateful to her for being so attentive. We too had to wait a year or so to see whether it would resolve itself. I worried A LOT at first, and told everyone about it and cried and generally was scared out of my mind. But then as time went on I got used to the idea of a yes or no outcome and got on with it. A year later we found that surgery was recommended, which coincided with me having time off work, so in we went. At that point my husband and I basically operated on tunnel vision, refusing to even discuss a negative outcome. Anytime the thought of something really bad happening arose, I blocked it out of my mind completely. We stayed in the hospital with him, the nurses were great, everything went well and as soon as my son was off the morphine, 2 days after, he was raring to go. Then I started worrying again :) It took him less than a week to bounce back, truly amazing. He had 6 weeks where he couldn't climb or jump but other than that it was like nothing had happened. He's 5 now, has a slight scar on his chest that doesn't seem to bother him, he talks about 'his surgery' openly and everyone is fine. I also have a friend whose daughter was born with major heart defects, had major surgery as a tiny newborn, and came out just fine, so that was helpful to think about when my mind wandered into what-ifs. As far as online support - I found it very scary, with lots of sad stories that I couldn't bear to read. You may have better luck through your hospital. If you want to email me feel free. Heart Mom
My daughter has a PDA that has not closed and the Doctor at Children's Oakland suggest a coil to placed has anyone had this done? How did it affect your child what are the risks? Help??
PDAs are some of the most common congenital heart malformations. You have probably looked it up online, there is a ton of info if you Google it. What they are proposing to you is not actually a surgical procedure, but an interventional catheterization procedure. An interventional cardiologist will guide a catheter through a blood vessel up to the heart and then a coil will be passed to the PDA to plug the opening. It is possible to have an open heart operation as well, but that depends on the age of the patient.
I hope all goes well, if you are worried about it you can always ask for a second opinion. Pediatricians are now trained to listen for those. Do not worry about, it is pretty routine and carries the smallest risk of all pediatric heart procedures. Hope this helps. Bistra
We have been told my five year old grandson will need open heart surgery to correct a VSD and a DCRV. We have some choice as to when to schedule the surgery, though we have been told it would not be wise to wait another 6 months to a year. Though he's had the VSD since birth, he is asymptomatic right now and not on any medications. In fact until he developed the DCRV we thought we'd avoided the surgery altogether. He is active and very much a lively child. It is an act of faith just to believe that we have to do this. My grandson is starting kindergarden in the fall in Berkeley. We have already paid for day camp through July and would like to have a vacation with him before we face this ordeal. He won't be allowed in water for a while after, our planned vacation was with my mom and her pool. I would like concrete advice from people who have gone through this regarding: 1. Scheduling. The Dr. says a child can go back to school 10 days after the surgery. (I would keep him home for a year). We don't want him to miss school if possible and to have the least amount of intereference with his activities at school, but don't want to miss out on summer either. 2. Tips & Tricks. Please, give us the scoop. What would you do differently if you had to go through it again. What are you really glad you thought of. Any practical advice on the dos, donts and whatch outs will be greatly appreciated. 3. Family help and support. My daughter has three children. The other two are 3 and an infant. We have a lot of family (some of it from out of town) and friends willing to help. For our sanity, their sanity, and the emotional security of all the children, what advice can you give in terms of what is helpful and what is not. Where and when did you feel you needed more help, when was it too much. How did you manage and coordinate it all? 4. Financial impact. Budgets are very tight. Summer camp was paid for partly with services barter. I am afraid of running up credit card bills just keeping everyone fed. Tips here would be great. 5. What kind of pain management (he's allergic to morphine) did you child have? What were the the hardest moments for your child? 6. How do you deal with this? I am barely able to breathe if for even a minute I let myself think about this as something other than an event I have to plan for. I can't get the images my imagination paints of this little child with his....deep breath...! I can't even look at my grandson without getting a lump in my throat. I can't look at my daughter without feeling like my heart is being wrenched out of my chest. I have to be her rock, so she can be his. Right now I feel like I'm just quicksand. Broken heart
I understand your concern- it is harder to see a child through these things, then to contemplate it for yourself. I work with children who have had serious surgeries and have a few bits of advice:
Be convinced that your grandson really needs to have this surgery- he almost certainly does, but you can plan better when it is more than faith on your part. If his parents haven't met with the surgeon, that may help in terms of another opinion. He can give his statistics regarding risks.
Even though you are the grandmother, if the parents are OK having you there, you can come to MD app't and ask questions, too. Happens all the time. You can advocate for the parents by being a bit of a squeaky wheel if they are uncomfortable posing more challenging questions.
In regards to how long your grandson will need to recover, talk to the child's cardiologists and surgeon. They have likely seen hundreds of kids through heart surgery and have considerable experience about how long a convalescence is necessary. After successful surgery, they will also want to do their best to avoid complications from pushing things too fast either, but the risks after surgery are mostly in the first few days and it's now felt best to get people up and moving after that. Adults are up and walking 1-2 days after heart surgery to prevent blood clots, pneumonia etc. Kids have a much lower risk for the complications of inactivity partly because it's hard to keep them down for longer than that and the tissues heal much faster.
I might consider getting the surgery done before starting Kindergarten. To start K, then a few weeks off for surgery, and then come back in and have to go through the adjustment a second time might be alot for a little one. One hurdle at a time. Once you all feel comfortable it needs to be done (and that's what you need to do first), the sad part is it will interfere with a long carefree summer anyway. A week of summer camp or vacation here or there will not be a big deal to your grandson in the long run. His health and first school experiences far exceed in their impact. If he seems to need more time for recovery, you might have to start K a few weeks later than planned, which is a downside, but probably no worse than doing it in the middle. Another possibility is to try to schedule it for the middle of the school year around the winter holidays, once he's settles into K, but then you have to worry a longer time.
Parents often do shifts of day and night duty at the hospital after the first day or two to be there for the patient and for the other kids at home. With a Grandma in the equation, you can be sure everyone's emotional and comfort needs are bring met. Be the rock for them, it will give you strength.
The accepted wisdom is to tell a child about coming to the hospital one day in advance for every year of age. So although he has heard about all this, don't start discussing specifics until the week before. Most hospitals have a Child Life specialist that will see the child at a pre-op visit to talk to them and show them oxygen masks and IVs using a doll. There is usually a social worker in every department to give assistance for finanacial/ emotional concerns, and parking/ food vouchers if money is tight.
Hoping for the best for your family Anon
Two suggestions: Whenever you plan the surgery, have it done on a Monday or Tuesday. Also, if you are going to a hospital that does medical training ( has med students and residents), don't schedule the surgery in July. That's when they turn over. They'll be supervised, but the longer you can go after July, the more experience they'll have under their belts. Sidebar: They won't do the surgery, but they may be the first called in on any problems that develop after hours. JM
Hi Broken Hearted,
My daughter had open heart surgery 2 years ago just before her 3rd birthday. Her situation was a little bit different than your grandson's (my daughter had a large atrial septal defect plus a deformed ventricular valve), but I feel I can help you answer your questions. Please feel free to call me if you want to talk to someone who has gone through this. It is extremely stressful! But know that we live in one of the best places in the world for pediatric cardiac care. Our kids are in great hands, whether they go to Stanford, Children's Hospital Oakland, or UCSF (where my daughter had her surgery).
Please call or e-mail. Some of this stuff is pretty personal and I would prefer to share it with you privately. Thanks,
My daughter is scheduled to undergo a cardiac catheterization procedure sometime in May or early June, and to undergo open heart surgery to correct Ebstein's anomaly later in the summer. Both procedures will take place at Children's Hospital in Oakland, under the supervision of cardiologist Dr. Kishor Avasarala and cardiac surgeon Dr. Frank Hanley.
I would like to hear from those whose children have had caths and/or cardiac surgery at Children's, especially if your child had either of these doctors or required correction of Ebstein's (which is pretty rare). I am so far comfortable with our doctors, but would like to know more about what to expect from them in a surgery situation. Also, I would like to know what was most helpful for your child before, during, and after the cath and surgery, what it was like coming home, if you had to cope with posttraumatic stress disorder, etc. Did the ChildLife specialists from CHO really help your family cope? I am trying to gather as much information as I can. Thanks.
I have a friend whose children dealt with Ebstein. She and I are currently fundraising for Children's Hospital and believe that they are a fantastic resource. Please email me and I'm happy to pass along her information. jules
I forwarded your post to my friend who has been there MANY times This is what she wrote: ~My daughter is a patient of Dr. Avasarala and Dr. Hanley's partner has done all three of her open heart surgeries. Morgan has also had two caths done and will be going for her third next month. We have done everything at CHO and I would be glad to answer any questions you have about the hospital and the doctors. There is a lot to be prepared for and I will just say don't count on the child life specialists for to much!!!
Hi, our son recently had surgery with Dr. Hanley (we haven't worked with Dr. Avasarala, but have heard great things about him), and we've had two caths at OHS. I have found it very helpful to talk to other parents and I'd be happy to talk to you about it if you want to email me directly.
It's funny you mention PTSD.
You don't mention how old your daughter is. My daughter had OH surgery to repair an ASD and a deformed valve almost 2 years ago, a month before she turned 3. We had it done at UCSF Children's Hospital because at the time, CHO wasn't an option with our insurance. The 6 week lead time from diagnosis to operation was the worst; the actual surgery time was extremely difficult emotionally for me; but the recovery was amazingly quick! She was in the hospital 5 days, then came home and happily ran down the hall to meet her brother. We had to be careful of her sternum for the next few weeks for it to heal, but otherwise she was fine. She was able to return to preschool 3 weeks post-op. Now, everyone who knew about the surgery has almost forgotten. ''Wow, I keep forgetting she had surgery!'' She has a chest scar, but it is fading. Once a kid at her preschool asked how she got the scar. ''Well, the doctors fixed my heart, and they gave me this scar,'' she said. She seems to have no emotional repurcusions and she has no restrictions on play or otherwise (except for taking antibiotics for dentist appointments).
Now, however, I have to wonder if I have some PTSD. My older child broke his arm recently and I found out today he has to have surgery under general anesthesis to stablize it. When the orthopedist told me, I almost burst into tears. Truthfully, the arm surgery is not that big of a deal, but I think because of what happened with our family already I took it harder than most would.
The emotional recovery from my daughter's surgery took a long time for both myself and my husband. I think it was at least 6 months before I could relax and let her play on playground structures without worrying too much about it, for example.
I am not saying all of this to scare you. I am just saying that some people may have a harder time dealing with the stress than other people. You may be one of those people, but you may not be. Most people would probably say that I handled the whole thing well, but on the inside I was a nervous wreck. Looking back on the experience, it was pretty ''textbook'': simple procedure, simple recovery. However, it affected me in a way I couldn't have predicted.
As for the child-life people, they were okay but pretty useless to me and my daughter. She was much more into playing with doctor kits and playing Doctor and Patient *after* the surgery. I am sure she needed to process some of what happened to her and this was the easiest way for a kid whose life is pretty much filled with imaginary play :)
(Aside: the diuretic liquid they give to reduce the possibility of fluid building up in the body tastes horrible. Much screaming and refusal to take the medicine ensued and finally the cardiologist prescribed a small pill instead of the liquid. I crushed it up and mixed it in some jam and it was MUCH better. If your child has the same reaction, ask the doc to do the same thing for you.)
Feel free to e-mail if you need someone to talk to. Laurel
Dr. Avasarala is an outstanding cardiologist who is brilliant and also very caring, thoughtful and has a great bedside manner. He is an expert in cardiac electrophysiology and does many, many catheterization procedures on tiny infants and children. You should have complete confidence in receiving the best of care from him. I have worked with him and seen him care for many patients. Anon
The family doctor just told us that my 3 month old son has an abnormal heart murmur and has referred him to a cardiologist. The doctor thinks it might be Ventricular Septal Defect (VSD). I'm really worried about my baby and how his heart might affect his growth. What signs should I look for? How are babies affected with VSD? Has any baby had to get a heart surgery for VSD? Worried Parent
Please don't worry! My 6 month old son was diagnosed with a heart murmur at 2 days old. After the echocardiogram it was discovered that he had 2 holes - one within the heart (not recalling the proper term) which was attributed to the muscle fibers having not finished closing up and the VSD. When he returned to the cardiologist at 2 months the higher hole was gone and the VSD was much, much smaller. The cardiologist said that you cannot hear the murmur at all and before the echocardiogram was invented they would have considered him cured. We go back when he is 2 years old and the doctor said he would be surprised if it was still there. If it IS still there, the only way his life would be affected is that he would need to take antibiotics when getting his teeth cleaned. If your baby is nursing without sweating and generally looks like a healthy baby (no blue fingernails/lips) it sounds like you are in the same situation. My dr. was great - said there is no reason why he shouldn't play competetive sports (unless he inherited my genes, that is) even if the VSD never fully closes up. I also found it reassuring to have that second test done so he could see that the hole was very much on the mend - gives me hope and peace of mind as we head towards the 2 year check up. My son is now 6 months, over 20lbs and almost 29'' long, so I think that the VSD has had no effect on his development thus far. Good luck! catherine
Hi, I know how scared and upset you must be right now, but try not to worry, as your worry about the visit with your cardiologist will be communicated to your child (no matter how hard you try not to!). I recommend, if you can, that you see Dr. Kishor Avasarala at Children's Hospital in Oakland, as he is the warmest, kindest, and best kids' heart doctor!! It is important to remember now that your child cannot be diagnosed at all without an EKG and echocardiogram, and that your pediatrician cannot tell you what exactly is causing the murmur. Many conditions that cause murmur do not require surgery, but again, many do. Try to breathe through this until you know for sure what is going on with your baby's heart. VSDs often require heart surgery, which the team at Children's does VERY WELL. They are absolutely wonderful, and their surgeons--particularly Dr. Frank Hanley-- are world class. They will answer all your questions and concerns, and will help put you in touch with other families who have faced similar ordeals. Bear in mind that surgery for many VSDs is straightforward, and often result in just patching the hole and require no further surgery. Take good care of yourself and your baby, and try to breathe as much as you can. elizabeth
I don't have a child with a ventricular septal defect, but I was born with a VSD and still have it. In my case the doctors thought I would have to have heart surgery to repair it by the time I was 2 years old, but the medical wisdom changed before I hit my second birthday and no surgery was done. Mine is very small and it has never caused me any problems at all - I take antibiotics before I go to the dentist and I have an EKG every five or ten years to check on it. When I was very young I had EKGs more often. I think the seriousness of this condition can vary, but I wanted to let you know that it isn't an automatically bad diagnosis. Incidentally, I am now 34 and pregnant with my first child, and my heart murmur isn't having any impact at all. Mostly I forget that I have it. Best of luck to you and your child. Al
I am in no way a expert in heart murmurs, but I know how scary this diagnosis can be, as my oldest son has a VSD. In our case, after tests with cardiologists at Children's, they determined that he had a tiny VSD, and that no surgery was necessary. He is a healthy, active 8 year old now, and can participate in all sports, etc., with no restrictions whatsoever on his physical activity. The only lifestyle change is that he must take antibiotics before dental appointments. Of course, you won't know what your situation is until you see a specialist, but I hope it's of some comfort to know that a VSD is not always something that needs to be repaired surgically. Good luck to you and your family! Kim
My 20 month old son is about to have a Cardiac Catheterization procedure to close his PDA (hole in his heart) at Oakland Children's Hospital. Does anyone have any experience with this? What was your child's experience like if they had this procedure done? Thanks much!
My daughter, who is now almost two, was born with a fairly major congenital heart defect (transposition of the great arteries, a large VSD, an ASD, pulmonary stenosis)... so we've been through two open heart surgeries and she's doing fantastic! I'm telling you this because she's a patient at Children's and everyone in cardiology is really terrific. We've gotten to know all of the cardiologists there, and they're all great. One of the procedures she had to have done five months after her first surgery was an exploratory cathaterization, which is actually not that different from a PDA procedure. She did fantastic and we actually were able to take her home that night. I think sometimes they keep kids overnight? I also have a very close friend whose daughter had the PDA procedure done when she was almost two. She also did absolutely fine and was out of the hospital the same day. Hope that helps to know. If you'd like to talk more about it, send an email and I'd be happy to send you my phone number and talk to you further. Tamara
I have a very strange heart beat sometimes. It doesn't happen during excercise and has nothing do to with drinking beverages with caffein. All of a sudden it beats very fast or sometimes it feels like a flickering heart beat which last only about 2 seconds. My doctor also just discovered that I have a heart deffect but he said it has nothing to do with irregular heart beats. I have a bicusbid aortic valve and I need to have yearly ultrasounds of my heart and take antibiotics when going to the dentist. I was shocked that I had something wrong with my heart because I am not overweight, my cholestherol is 130, I eat healthy and work out an hour every day. The cardioligist told me to wear a device for 24 hours so he can see what 's up with these strange heart beats. Of coursce after wearing the device for 24 hours I didn't get these strange heart beats. Sometimes I have them only once a week and sometimes I have them every day.
Should I just wear the device again until we catch these strange heart beats or should I just not worry about it ? I read that irregular heart beats can lead to a blood clot in the brain and sometimes lead to a stroke. Does anybody out there has the same experience with a strange heart beat. worried
Your bicuspid aortic valve is something you were born with,it happens in 2% of people (the valve has 2 flaps instead of 3). It often causes no signs or symptoms, esp. in childhood. During the aging processes these valves can sometimes develop leaks etc., so this is why follow-up is recommended
Many people have occasional ''skipped'' or ''extra'' heart beats, and usually they are not dangerous at all. If it only lasts a few seconds, or if you get a few flip-flops over a couple minutes, it's probably nothing to worry about. The Holter monitor you had is helpful even if you were fine that day- if it was normal it means you're not having lots of irregular beats all the time- just when you notice them. Very rapid heart beats that don't stop or fainting/ lightheadedness are signs of a serious heartbeat problem.
Neither of your heart concerns is at all due to poor health practices or diet or cholesterol- those can be related to a 3rd type of heart disease problem, ''coronary artery disease'' which is the build-up of cholesterol in the small vessels of the heart, which can block oxygen to the heart leading to heart attacks. a cardiologist
First of all, I think this is a question you really should discuss with your doctor but having said that, I had a similar experience about 2 years ago.
How old are you child(ren)? I began to notice my irregular heartbeat shortly after my daughter was born. I went to the doctor and wore the heart monitor for 24 hours. I didn't have much activity during the time I wore the monitor either but my doctor discussed how sleep deprivation can cause heart flutters. It wasn't really an answer I wanted to hear but sure enough, as soon as my daughter started sleeping more at night, my heart flutters virtually disappeared. I still get them on rare occasions but they really do seem to be more prevalent when I'm running low on sleep and high on stress. Good luck! Linnea
You should consider having your thyroid checked out. It's good that you're seeing a doctor about your heart, but you'd be suprised how many scary symptoms are caused by thyroid disfunction - symptoms that doctors can misinterpret. I don't know if your problem is thyroid related, but you and your doctor should leave no stone unturned until you discover the problem. I hope this is helpful. MEG
I went through a period a number of years ago (mid 30s) where I was convinced I was having heart problems. I even saw a cardiologist. He confirmed that I had a racy heart and some adrenaline overproduction issues which were also contributing to panic attacks. He tried treating things with a beta blocker, but my blood pressure dropped and there were other undesirable side effects (fainting, etc.). Ultimately he just suggested lifestyle changes; better diet, and more exercise, which completely fixed everything. During these episodes, like you I was convinced I was experiencing some very irregular heartbeats. In my case (I'm sort of embarassed to confess) the doctor determined that the fluttering, irregular heartbeat I was experiencing was not my heart at all, but my esophagus (and related organs) spasming around or after large meals. It was occurring on the left side and I assumed it was my heart, but in fact it was not. Your situation may be something different, but I thought I'd mention this. Don't know my heart from.....
It sounds like you have a mitral valve prolapse, which is very common in women and quite common in men. Although it feels strange to have your heart bumping around in your chest at times, it is not dangerous to your health. Antibiotics are recommended when you have dental cleanings because the bacteria in your mouth that gets scraped off your teeth can more easily enter your blood stream and end up trapped around the floppy valve, possibly causing an infection in your heart. If this is what you have, other than the antibiotics, you should ignore it and not let it get in the way of any of your normal activities. The Holter monitor test is just a way to look at the beats. The ultrasound can see the workings of your heart quite well. You need to get more information from your doctor on this so that you can relax about it! Got one too.
I also have the irregular heart beat problem, which I found out about 2 years ago. I also wore the Holter Monitor which showed nothing so the Dr. had me wear the Event Monitor for a month. The Event Monitor showed the problem quite clearly. I am currently on Betapace medication to control the beats per minute. I am watched closely and also found out at the same time I had high bloodpressure so am on meds for that also. The Doctors said I could have surgery for the heartbeat problem which they say is an ''electrical'' problem, however the risks far outweigh the advantages so I am just taking the pills since they are able to control the problem. However, if I run the heart starts racing so I am careful not to run, just walk, then I am fine. anom
I don't have an answer about the cause of your irregular heart beat, but just wanted to let you know that I get the same thing and it is scary! It happens to me off and on. Sometimes for a few days it will happen a lot and then I won't get it for quite a while. I'm never sure what triggers it. I thought sometimes perhaps it might have been stress-related, or something I ate. When I was pregnant with my second child, I had an irregular heart beat A LOT and it worried me, but my Dr. didn't seem worried about it. I thought it was a hormonal thing, but who knows. Anyways, I'll be interested to read the responses to your posting! Alexis
There is a longer type of monitor, which monitors for 30 days. Ask the cardiologist if this would be appropriate. Also, blood clots are complications of ongoing irregular heart beats (ie, continuous, as in atrial fibrillation). Discuss it with the cardiologist if you have concerns. kristin
I can't tell you what you'd like to hear, but I can say that you have described my symptoms almost to a ''T.'' Maybe this will be reassuring, and maybe not: I had to wear one of those things around for 24 hrs too, and mark down my symptoms whenever I had them, but wouldn't you know it, I had broken my ankle a week before the device became available (I was with Kaiser, and they didn't have many of them), and so I was fairly sedentary that day and didn't experience a single symptom. If you have the option of wearing the thing longer, I'd do it--I would have loved to have had a real answer to the thing, because as you know, it is terrifying. I never really got an answer to why my heart would race like that, but it eventually stopped. (I told myself it was because our house had been treated with Chlordane for termites, which has since been banned, but I say that without any direct evidence-just as a way of giving myself an explanation). I also told myself that maybe it was some funky stress response-it was my first semester of grad school, which was stressful, and I was sort of newly married, which didn't seem stressful, but it was new and different. And though it didn't seem to necessarily relate to feelings of stress or even to stressful moments, there were periods when I was not getting a lot of sleep, so who knows? Another doctor had said he heard a heart murmur, which seemed to come & go, and most of the docs didn't find this alarming. If it's any help, that was 17 years ago for me, and I only experienced it for about 6 months to a year. I still occasionally have the fluttery feeling, but not the racing beat, and when I was pregnant I had it more, and felt like my heartbeat was irregular sometimes. Other doctors have noted the irregular heartbeat, but nobody seems alarmed, and I've been diagnosed as being in great health. I haven't been told that I need to take antibiotics for dental work, though my dentist required me to get a note from my doctor. I'd love to know if you find anything out. janet
I have no advice to offer but I have had similar instances where I feel as though my heart lurches or beats funny. I went to see my Kaiser doctor. After he heard all of my symptoms, he seemed to think it was stress that was causing it. I am not sure how old you are but I am 30 and healthy with no family history of heart disease. My other symptoms included increase in thirst and appetite. I later figured out the thirst and appetite was caused by green tea. I had started drinking green tea after the birth of my son.
I still have the irregular heart beat though some weeks it seems to happen more times than other. It causes me to stop and brace myself at its worst, other times I don't skip a beat. (no pun)
I am glad your doctor is asking you to monitor it. I would suggest you be insistent with your doctor until you reach the bottom of it. something similar
Sounds like what you're having is probably atrial fibrillation. you won't know until you wear that monitor and it happens. I think you should continue to wear the monitor as long as it takes. Its not usually fatal, lot of people live with a. fib, but its good to know what it is so you can have it treated appropriately and so that you don't treat it inappropriately. A. fib can cause clots to form and can lead to strokes, if that's your problem.
As for the valve issue, it does sound like it's probably unrelated but maybe you should see a cardiologist (about both things). The practice of taking antibiotics for any dental procedures for anyone with any valve abnormalities is decades old, I think. It is recently being questioned - some think it's done too much and many don't need the antibiotics. you sound pretty healthy and the valve didn't just become that way - you were born with it. have you taken antibiotics for previous dental work? do you have a murmur? (murmurs MAY indicate valve problems but not necesarily). An echocardiogram would tell if the valve is malfunctioning in anyway and may indicate if you really need medication. My husband had a murmur at some point in the distant past and had taken antibiotics ever since before any dental care - noone questioned it or reassessed his supposed murmur - whatever he had in the past, he has no murmur now. I don't think he's at risk for endocarditis which is what they're trying to prevent.
Back to the a. fib for a minute - just to be on the safe side until you get it all figured out, you should look up signs of a stroke and tell your significant other since many stroke victims don't know that anything is happening. If you do have any symptoms there are wonderful medications that can give you back your quality of life within hours, but you have to get to an ER AND get a cat scan within 4 to 6 hours of the onset of symptoms (this means if you wake up after 8 hours of sleep with the symptoms, you are out of luck) to get this medication. If you have storke symptoms, you call 911 and get an ambulance (ambulances are the best way to skip the que in an ER and get the busy people working there to take your case seriously and quickly) sorry for the long reply. This is what I would tell a family member in your situation. not-giving-medical-advice RN
It may sound odd, but get your thyroid checked. anon
I have random palpitations, a malformation of one of my heart valves, a heart murmur, and I also take antibiotics before dental work. I had lots of tests done in my late teens & early twenties, all of which were normal in terms of heart function, so I just try not to worry about it. According to my doctor, my life expectancy is not affected by my condition. You may want to see a cardiologist, to see if there are any other tests that could be done, so that you could be reassured that your heart is functioning normally. I have a prescription for a beta-blocker that I can take if the palpitations become too annoying, but I rarely take it. It's terribly scary to have irregular heartbeats, people who haven't experienced it can't really understand how disturbing it is. I've pretty much adjusted to the weirdness over the last 30 years or so, but every now & then, usually in the middle of the night, I'll have a moderate panic attack over it ... I remind myself that I've had lots more heart tests than the average person, so I've got proof that my heart is working fine. I think if you have a thorough exam by a cardiologist you'll feel better. anon
I have a thumpity thump that is so strong I can feel it with my hand. I hear it mostly when I'm lying down or drink too much caffeine. My doctor told me I had Mitral Valve Prolapse and to take antibiotics for dental work. She order an echocardiogram 'just to make sure.' Now, an echocardiogram is about the neatest thing one can see. I'd try to get one of those done just to see your heart moving blood in and out. It turned out I was 'within normal range' even though the technician saw blood spillback. So I do not have to take antibiotics. Carrie
I have had the kind of symptoms you described, e.g., racing, loudly thumping heartbeat, missed beats, etc., for several years now, and I can definitely say that they occur during two circumstances almost exclusively--shortly before my period and/or when I'm getting dehydrated, as I tend to run around alot without adequate fluid intake. After consulting physicians (including a cardiologist) who could find nothing wrong, I remembered that my grandmother used to suffer from bouts of sodium deficiency. So I began to drink Gatorade on a regular basis, and the pesky missed heartbeats and palpitations have disappeared. I'm not sure if there's a cause-effect connection, but maybe. Karen
We recently learned that our newborn son has a serious congenital heart defect. I have seen the posting from July regarding cardiac surgeons, but I would also like to know if anyone knows about objective sources of information to research such surgeon;s experience and results. Also, I would love to talk directly with anyone who has experience with the surgeons at Oakland Children's Hospital or just experience dealing with a child's heart defect. Ellen
Our 3 yo daughter was diagnosed with primum ASD last July and she had corrective open-heart surgery in August. Our insurance wouldn't allow us to go with Children's Oakland so we chose UCSF. Her surgeon was Dr. Tom Karl, who donates his skills to children with congenital heart defects in Central America yearly. We were happy to have a man of his integrity operate on our daughter. We were very happy with the care we received from the hospital staff as a whole. Nurses and doctors who choose to work in pediatrics are very caring, special people. The Bay Area is a great place for pediatric cardiac care so you really cannot go wrong with whichever hospital you choose.
Just so you know, our daughter was home 5 days after her surgery. She was so excited to see her older brother, she ran down the hall to meet him! She now is totally fine and healthy, and has no restrictions. I don't know what defect your child has, but it is amazing what doctors can do nowadays.
It was a very stressful time for us and I know what it is like. I would be happy to talk with you. Please e-mail. Laurel
Hi, I am so sorry to hear about your son's heart anomaly. I know it is a shock to discover this reality at such an anticipated, and vulnerable, time. While my daughter has not yet had heart surgery at Children's Hospital Oakland, we have been thoroughly impressed with our cardiologist there--Dr. Kishor Avasarala. The surgeons there, particularly Dr. Frank Hanley (he is chief of ped. cardiothoracic surgery at Stanford, too) are excellent, and nationally known. I think you are in good hands. I know you and your family are going through a lot of chaos and uncertainty, and I truly sympathize, as my family and I went through much of the same upheaval.
One other piece of unsolicited advice: try to get support for yourself and your family as soon as possible & don't scour the web for info on heart defects until you have such support, as it can send you into a tailspin of confusion, worry, and/or depression. If you would like to talk, feel free to call me. Elizabeth
My son had surgeries for Tetralogy of Fallot (a congenital heart defect)several years ago. The surgeon both times was Kevin Turley (surgeries were at UCSF and Kaiser SF). We are Kaiser members and he's the pediatric cardiac surgeon they contracted with. I was impressed by Dr. Turley's dedication and we had good outcomes (as far as we know) but it is difficult for a laymen to speak to a physician's quality. It was quite an ordeal to go through but necessary. We are thankful that our son is alive and thriving. I would be happy to talk with you about the experience. mg
I'd like to highly recommend Dr. Ziad Saba at children's hospital in Oakland. He's sensitive and kind, good with kids, and most importantly he actually converses with parents instead of just lecturing. I'm the kind of guy who reads obsessively on my own and he's been very generous in discussing journal articles with me and taking my opinions and knowledge seriously. Talking with other cardiology parents, I have heard nothing but good things about all of the docs in this group. In particular, one friend has very good things to say about Dr Avasarala (sp?). I think you can't go wrong with this whole practice. zac
I'm so sorry to hear about your son's condition. There is a surgeon at Childrens Oakland named Chris Hardy. He is very well respected and was the leader of a team of doctors who trained surgeons in the Soviet Union over a number of years. Children's Oakland also has social workers who can link you up to other families who have children with heart defects similar to you son's. Wishing you and your son all the best. Karen
I had a consultation with Dr. Craig Albanese, head of pediatric surgery at Standford. I felt in good hands although we never did require his services. His number is 650-723-6439 best of luck to you
Hello parent, I work with several pediatric cardiologist and cardiothoracic surgeons and several who have moved on to other institutions. Alot depends on the kind and severity of defect your child has. Even the simplest defects can still have complications. I would highly recommend Dr.'s Frank Hanley and Mohan Reddy, both who are currently practicing at Stanford Hospital. Pediatric ICU RN
We had a great experience at Oakland Children's Hospital where our child had heart surgery last June. I'd be happy to talk to you about it. You can email me offline at ML
My daughter, now 18 months old, was also born with a serious congenital heart defect (Transposition of the Great Arteries, multiple ASDs, a large VSD). She's been treated at Children's hospital since birth and we've been extremely pleased with the care. She's doing FANTASTIC! We love our cardiologist, Dr. Avasarala and I recommend him highly and without reservation. My daughter has had two open heart surgeries so far and has more in her future. Our surgeon thus far has been Dr. Mohan Reddy. We've heard he's one of the best. He was recently written up in the Best Doctors in the Bay Area issue of the San Francisco Focus Magazine and we've read other articles over the past two years touting his expertise. He works with Children's Hospital and with Stanford. Dr. Hanley has also been highly recommended to us as the best pediatric cardiac surgeon out there, he also performs surgeries at Children's. Please feel free to email me directly as you are going through this. I would be more than happy to share information and/or just listen. Best of luck. Tamara
It's hard to get ''objective'' information about physicians- who would evaluate them except peers who work with them- test scores for instance wouldn't tell you much about surgeons? How does someone ''grade'' your pediatrician for instance- whether his patients like him? No one gives scores for his success rates with ear infections- alot has to do with how patients respond to therapy. The ''best doctor'' issues in the SF Magazine and US News are based on rankings by other MDs who are in turn basing on ''reputation'' or personal experience, which is biased- if you work with a particular surgeon, you don't work with many others to compare to. If a surgeon has published journal articles on a particular subject, he is very likely to have had good results in that area, but it doesn't mean he's the best. Comparative results by surgeon for any particular heart surgery are not published on the Internet- there are too many factors to consider- every baby's exact heart problem is a little different. The best you can hope to do is to ask overall mortality rates for a particular heart surgeon, BUT the best surgeons often operate on the most complex cases, so they might have a higher mortality rate because they take on cases other surgeons have felt were too high risk.
In general, for all types of surgery, surgeons that do alot of cases are better than those that don't, and larger centers, such as those of universities and children's hospitals have better results. You are in good shape to be in the Bay Area in this regard- lots of patients served by large centers for cardiac surgery. Ask your cardiologist who he would recommend, ask why, and ask to have a conference with the surgeon- and if you aren't comfortable, ask for someone else as a ''second opinion''. There are parents support networks online where you can get the ''buzz'' on MDs for particular diseases. Be warned however, that if a child does well, his surgeon is God of the universe; if not, he is a horrible surgeon that should have his license revoked, so this is the most subjective information of all.
Unfortunately, medicine is still a very human science, involving alot of trust between families and MDs. Having had a child who had relatively minor surgery, I know it's a leap of faith to allow someone to carry my child out of my arms into an operating room- you do the best you can to assure yourself your baby will be in competant and caring hands...and then you just have to leap. Best wishes...
I just had a heart ultrasound done and my doctor found out that one heart valve is missing ( I am born like that). He was doing the ultrasound because he wanted to check out a heart murmur. The cause of the hear murmur is that I have slightly worn heart valves since one valve is missing. The doctor said that I propably won't have any problems right now but maybe in the future. In this case the valve might have to be replaced. I am otherwise pretty healthy. I don't have high cholesterol, I am not overweight, I don't smoke and I eat healthy and excercise. I just thought I post this since I want to know how other people deal with this condition. Has anybody had surgery because of that ? How is life after that ? I know I can ask this questions also my doctor but it's good for me to know from people who have what I have. Should I also get another opinion ? How else can I prevent my valves from getting worse ? Is this condition considered very serious ? Any input on this would be very helpful for me.
I don't know if my dad's experience is helpful, since things may have changed since his valve problem many years ago. He had always had a hole in his valve, and there was talk about surgery, but he didn't do it until he already had major heart damage, and he never really recovered from the damage. I also know of someone else that this happened to. It seems like you should find out whether there is a point at which you can catch problems before they cause irreversible damage. I always wished he had taken the risk of surgery when he was reasonably healthy. anonymous
My husband and I were recently presented with the distressing news that our almost 3 year old daughter will have to undergo open heart surgery. Our initial consultation was at UCSF but we are also open to going to another facility for the procedure. Our insurance contracts with Lucille Packard and we're more inclined to go there, but we are still in a bewildered state and we don't really know what to do. Does anyone have any recommendations? Our daughter has a form of VSD called ''ostium primum atrial septal defect.'' Any advice or recommendations would be greatly appreciated. Thank you! Laurel
In that I am a local pediatrician, I can't play favorites but a little info to get you started on making your decision. First, please try not to worry too much. Open heart surgery is never a trivial matter, but the risks of complications during this specific surgery are very low, and once repaired you can look forward to a normal life for your daughter. As well, there is alot of attention paid in recent years to making incisions so that the scars are more cosmetically acceptable.
Second as regards terminology, your child has an ''ASD'' (not a VSD) for ostium primum Atrial Septal Defect, ''primum ASD'' is the most efficient way to say it while providing complete information to physicians. ASDs are holes between the upper chambers of the heart (the atria), VSDs are in the lower chambers (ventricles).
In the Bay Area, there are 3 excellent places to have heart surgery for children: UCSF, Stanford/ Lucille Packard, and Children's Hospital Oakland. The best known pediatric cardiac surgeon is Dr. Frank Hanley who operates at both Stanford and Children's, although he was at UCSF until 2 years ago. His associates, Drs. Mohan Reddy (Stanford) and John Lamberti (Children's) as well as Dr. Tom Karl (at UCSF, came when Hanley moved to Stanford) also have outstanding results. I know that Dr. Hanley makes a fairly small ''limited sternotomy'' (vertical middle of the chest) incision and that Dr. Lamberti has the largest local experience with the ''submammary incision'' for girls, which is about the same size but lateral under the breast area, so it will be hidden by a bra or bikini top and under the curve of the breast when she grows up. Look up the surgeons and the incisions on the Internet.
Your child's heart defect is relatively common, and all of these surgeons have alot experience with it, I would make your decision taking into account your insurance coverage- for instance, it's not worth the extra premium to have surgery at UCSF if your insurance contracts with Stanford/ Packard. But if there is a surgeon, hospital, cardiologist, or incision you really prefer, take that into account too. Anon MD
Our son has undergone six surgeries, with all but one of them done by Dr. Frank Hanley. He was born with a very rare heart defect and Dr. Hanley was the surgeon who pioneered the type of surgeries that he needed. We think he is an excellent surgeon and have been told by many that he is the top in his field. He was at UCSF when our son had his surgeries, but has since transferred to Stanford. We also think highly of the practitioners at UCSF, but have not had any of their surgeons perform the surgeries so can't speak to that. If you would like to talk further, feel free to email me. Terry
My daughter just had a brand new baby boy. This joyous occasion has been marred by the discovery that the baby has VSD and faces almost certain heart surgery. The size and location of his hole makes it unlikely it will close by itself. I'd like to know if there is anyone out there who has faced this problem and hear your experiences with it. It's very scary, but I hear it's not altogether uncommon. Thanks.
I am a pediatric nurse with years of experience of taking care of children following cardiac surgery. A VSD is one of the least dangerous conditions to have, although surgery is a must, to prevent further problems. The baby will have a long surgery requiring heart/lung by-pass, and will come out of surgery looking very scary, with a tube in every orifice. However, do not be alarmed. Gradually each tube will be removed, over the next few days and the baby will wake up very hungry. The incision is mid sternal, and not as painful as it looks as there is very little muscle in that area. However, the baby will receive plenty of pain medication throughout the whole event, and will feel quite comfortable. The baby should go on to lead a normal life, and require no further surgery. Extra anti biotics may have to be taken for dental/surgical procedures later in life, also keep away from people with infections. If you have any more questions, I would be happy to answer any that I can. But overall, this is a very successful surgery, leaving no side effects, with a quick recovery. Paula
Congratulations on the birth of your grandson! I know it's hard to hear any news of a birth defect but wanted to share my own experience in hopes of alleviating unnecessary worry. I was born with a VSD in 1963, and while it is serious, I've had a very normal, active life. I am told that had I been born 20 or more years later surgery definitely would have been recommended, but at the time it was considered very risky and my family would have had to raise money to pay for it had they decided it was the best thing to do despite the risk. Each year during childhood I went to a major hospital for a thorough cardiology appointment. I remember kind of enjoying it as I got to visit many different parts of the hopsital, and see all kinds of fancy equipment. I am still followed every other year, and I take antibiotics for dental work. I did get bacterial endocarditis as a senior in high school, and this is really the biggest concern one has with an uncorrected VSD. I am also watched carefully during pregnancy (which obviously won't be an issue for your grandson!) But otherwise I am healthy, active, adventurous and happy (I'm a runner, backcountry hiker, was a serious dancer as a kid, and have hiked long distances in high altitudes with no problem--for example in Tibet at 17,000 feet). I imagine that if your grandson has the surgery, he will be able to lead a fully active life without the concern about endocarditis. I know that surgery on an infant or young child will be very scary, but it is my understanding that this surgery is now considered rather routine and is quite safe when performed on young ones (it's riskier during adulthood apparently). Also, I was a great treat in science classes when everyone lined up to listen to my very loud heart murmur. But, with surgery, I guess your grandson's murmur will go away?! I think that my attitude about the VSD was probably influenced most by the honest, positive and normalizing attitudes of my doctors and parents. I saw the VSD as something interesting, and to be watched and respected (I never once tried a cigarette on the advice of my pediatric cardiologists!), but not as a limitation. So, I guess my advice to your daughter would be to find doctors with excellent medical training and whom you also like as human beings as you may have a longterm relationship with them. And don't worry too much! My very best wishes to you, your grandson and the rest of your family!