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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
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
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
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??
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
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
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.
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
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!
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
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
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
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
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
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
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
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
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.
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
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
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