Having more then one child with Hypoplastic left heart syndrome?

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I was wondering if anyone knew of or has had more then one child with hypoplastic left heart syndrome? I know someone that has had two and one that has had three. Anyone else in the same boat?
This incidence of congenital heart disease in the population is about 1 out of 1000. Of that the percentage of kids having hypoplastic left heart syndrome is even less. When a parent has a child has a child with a heart defect such as that I believe the chance of a second sibling having a congenital defect goes up to about 5 in 100 which is higher but still low. I work for a pediatric cardiologist and I would say the two people you that have multiple children afflicted with hypoplastic left heart syndrome is the exception rather than the norm. Anecdotally, it does seem that many times when one child has a left sided defect a subsequent child that does have a congenital defect usually doesn't have exactly the same thing as the first. Interestingly, there have been many cases in which identical twins are born and one has a heart defect and the other is completely normal. So genetics aren't always the cause. Hope that sheds some light.  (+ info)

Does anyone have or know someone that has Hypoplastic Left Heart Syndrome?

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I have a really good friend that is now 21 that has this heart problem.
Had a cousin with it. Just make sure she does all the doctor says and it wioll be more comfortable for her.  (+ info)

What other surgeries may be performed on a child with hypoplastic left heart syndrome?

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I have read that a kid with HLHS that has undergone the Norwood, Glenn and Fontan procedures, may require additional surgery later in life. Which surgeries may need to be performed and normally, at what ages?
I am certain that you are aware that hypoplastic left heart syndrome is a very serious condition with a very guarded prognosis even with surgery. All of the surgical procedures currently in use require later surgical revision. Which is most likely to be done first depends upon the medical center. In Dallas the Fontain would be the intervention of choice unless there are other factors to consider besides just the hypoplastic left ventricle. Another plus is that there is much more data concerning the outcome after the Fontain than the other surgical approaches that you reference. I hope this is an academic question and that you do not have a child with this unfortunate problem. If I may be of further assistance please let me know. I wish you the very best of health and may God bless.  (+ info)

I have a 20 month old with hypoplastic left heart syndrome how low should there pulse ox get?

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He has had two surgeries he still needs his last one.
  (+ info)

Have you heard of Hypoplastic left heart syndrome?

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My unborn daughter was diagnosed with this just this week. I wonder if anyone out there has dealt with this before. and if you have any experience with the cardiac center at Presbyterian St. Luke's Hospital in Denver.
i have heard of it. I am so sorry your daughter has it. Im not sure what you know about it, but it is a very complicated heart problem. The left side of your babies heart will be severely underdeveloped. She will need surgery most likely shortly after birth because she will start turning blue. The truth is, your baby is a very sick little girl. There are 3 options before birth. 1. abort(which im sure you dont want to do.) 2. a 3 step surgery. and 3. a heart transplant.
This is about the surgery(which most people do) ---> The first stage, referred to as the Norwood procedure, allows the right ventricle to pump blood to both the lungs and the body without the need for the ductus to be kept open. Blood is directed to the lungs through either a Blalock-Taussig (arrow on inserted picture) or Sano shunt. The Norwood procedure must be performed soon after birth. The second stage (bidirectional Glenn or hemi-Fontan) is usually performed between 4 and 12 months and the third stage (lateral tunnel Fontan or extracardiac Fontan) is usually performed between 18 months and 3 years.These operations create a connection between the veins returning low-oxygen (bluish) blood to the heart and the pulmonary artery. The goal is to allow the right ventricle to pump only oxygenated blood to the body and to prevent or reduce cyanosis (lower than normal blood oxygen levels). Some infants require several intermediate operations to achieve this.Children with HLHS require lifelong follow-up by a cardiologist for repeated checks of how their heart is working. Virtually all children with HLHS will require heart medicines, heart catheterization and additional surgery.


The most dangerous step of the surgery is the first step the norwood, there is a 75% survival rate after that, the next two surgeries have a 90% rate survival. When your daughter gets older i would recommend a camp called Camp odayin, its a camp that costs 25 dollars to attend and it is located in northern MN. It is a camp for kids with heart disease, they have cardiologists and nurses at camp for meds and supervision of the children so your child would be completely safe. It will help your daughter to meet other kids with the same problems as her.

I know quite a few kids from camp with HLHS unfortunately not all of them survive, i have lost two of them from heart disease. But that does not mean your child will not survive. just trust the doctors and you can get through this.


Good luck with your baby, i hope you all the best and that your child will beat the odds and have a GREAT life!

Feel freel to email me through my profile if you have more questions  (+ info)

My in utero Daughter will be born with hypoplastic left heart syndrome?

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Im 8months pregnant and just finding this out, me and my fiance are devastated, there talking about inducing me in OSU Then sending her straight over to childrens in columbus for surgery, we plan on doing the hybrid procedure, but are scarwed to dealth for our daughters life, has any one been through this personally ? we just need someone to talk to better understand how she will be after surgerys normal living and things of that nature.
I can tell you that i am really sorry for you,,
but try to remember that every negative side comes with a positive one,,,it is rather a cosmic law.
maybe this child will do what no healthy human will ever do.
anyway ,,,as i remember in my second year in med school Hypoplastic left heart syndrome is curable with Narwood procedure i guess ,,but with with life long implication ,,that she can adopt to ,,and becomes unnoticeable
God Bless You  (+ info)

Are there different kinds of hypoplastic left heart syndrome?

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yes, also see http://circ.ahajournals.org/cgi/content/full/117/17/e319  (+ info)

I am pregnant and my baby was just diagnosed with Hypoplastic left heart syndrome, where is best place?

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where is the best place for treatment? I have looked at several hospitals online, but who is the best. Money is no object, just the best care for my child. Even if outside of the United States.
childrens hospital in philedelphia is a great place and i believe there is a childrens heart hospital someplace in arkansas...cincinatti also has an excellent childrens hospital and there is always the cleveland clinic  (+ info)

Anybody out there have children with Hypoplastic Left Heart Syndrome?

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Hey.
I was wondering whether there other people out there who either have children or themselves have the heart condition - Hypoplastic Left Heart Syndrome? My daughter was born with the condition and has been in hospital basically the last 6 out of 9 months of her life. I was wondering whether anybody else has been through this and have any encouraging stories etc. - or even of you just wanna talk about your fears/concerns etc.
I have a web site for my cousin's son, Jackson, who was born with HLHS last September.
http://www.hometown.aol.com/xbratx0203x/Jackson.html

There are also several people and groups on MySpace that I have on my friends list if you want to take a look
http://www.myspace.com/xbratx  (+ info)

How is hypoplastic left heart syndrome treated?

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it is treated with 4 options

1. compassionate care
2. norwood operation path
3. hybrid operation path
4. transplant

norwood path is the way we chose to go it is a larger procedure in the first week of life and a smaller one at 3-6 months and the fontan at 3-4 years

the hybrid is a smaller procedure now and a lager procedure at 3-6 months and also a fontan at 3-4 years

discuss all your options with your cardiologist completely  (+ info)

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