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Heart Surgery in Children
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Advice about Health >
Heart Surgery in Children
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.
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.
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.
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.
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.
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
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.
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
In many ways this will be harder on you than on your baby,
but hang in there.
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
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!
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
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
rounds of surgery for a birth injury so we had to wait for 3 years to
do the heart
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
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
trying to hold her and be with her as much as possible.
Write if you want to talk further.
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
Good luck and all the best to you and your baby.
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.
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
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.
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
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
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
5. What kind of pain management (he's allergic to morphine) did
you child have? What were the the hardest moments for your
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
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
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
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.
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.
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
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
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
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.
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.
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
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
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!
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.
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.
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!
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
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.
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
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.
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
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.
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.
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
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!
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.
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.
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.
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.
It may sound odd, but get your thyroid checked.
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.
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
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,
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.
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.
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,
If you would like to talk, feel free to call me.
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.
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.
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.
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
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
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.
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.
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!
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
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.
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.
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.
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
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
this page was last updated: Jul 16, 2013
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