Hypoplastic Left Heart Syndrome?

No advice, but try and get in touch with Devildogwife. Her son has this condition.

Suzberg has a little girl with this condition who is doing very well and also has bio children to answer some of the sibling questions too. She isn't on much but will respond to a pm and I'll send an email out to her letting her know you are here.:)

There is a wide range of outcome for HLHS but the surgeries are all considered palliative, not curative. Many kids do well until teens or early 20's but then may end up needing a heart transplant, which is also really palliative or trading one problem for another, more manageable problem.It is taking on a lot and the long term outcome is not certain at all. I don't mean to discourage you, just give you the truth. If she is 9, I assume she has had all 3 stages of her repair and must be doing reasonabley well. I would ask if she has had all 3 surgeries and what her heart function is like, can she keep up with other kids, how often is she in the hospital, how much medication she is on.Someone I worked with adopted a baby with HLHS and he is now 16 and has had a heart transplant and is doing well medically. You just never know.Good luck in making your decision.

Mommamarci and Crick: Thank you! I will get in contact with them. :banana: linda512: You're right that it isn't curable just palliative. We've been talking about what that will mean for our family. I starting doing a little research and there is a hospital only 30 minutes from our house that has deals with children who have that disorder. A lot is going to depend on the level of care of the child. You're not discouraging me at all. It gives me a lot to think about and some good questions to ask. Thanks everyone!

Here's some more details... Hypoplastic Left Heart Syndrome (HLHS) means that the left pump of the heart did not develop correctly in the womb. If this condition is not treated almost immediately after birth, the child will die. If the heart defect is seen at the 18-20 month ultrasound, the baby can be delivered at or near a large children's hospital, and will spend the early part of its life at the children's hospital heart surgery center. After birth, the infant is immediately put on medications to keep it alive, and then the heart center starts a series of surgeries. A heart transplant can also be done at this point, but it is a less common option. The girl that you mention would probably have had the three surgery option. She would have had the first surgery (called the Norwood) right after birth to patch up certain parts of the heart and make an extra connection to the lungs. The second surgery (called the Glenn) would have been done several months later when the lungs were more developed. The third surgery (called the Fontan) is usually done several years later. After this surgery is done, the child has a single ventricle (heart pump) which does all the work of pumping blood to the body. If her health is good, the nine year old may be on medications to help with heart function. She will need regular visits to a cardiologist, at least once or twice a year, and perhaps to other medical specialists if she is developing other problems that can arise with her condition. She will need regular echocardiograms, electrocardiograms, and exercise studies. What is the life expectancy? Good question. No one can tell. The surgeries have only been done for about 25 years, so the oldest HLHS kids are in their mid to early 20s -- some of them are finishing college and starting careers. The surgeries have gotten much better over time, so younger kids are doing better, health-wise. A heart kid will need a stable, loving family environment, which very sadly looks like it is not the case with this nine year old. She will need good health insurance, either through her family or through the state: in the best possible case, she will need her regular medical check-ups; in a less ideal case, she could need a heart transplant. It is good if you are fairly close to a large regional children's hospital. In regards to your question about your husband's concern about your four year old and fears of dying, he may be the one with the concern. How would you or your husband deal with getting close to a child who could die? (Remembering that many of the HLHS deaths occur between the first and second surgeries, or around one of the surgeries, and are less likely to happen if the child is otherwise doing well.) But your husband's concern is something you should treat seriously. It would be a big change to your lives to voluntarily join the heart community. What I would suggest if you are interested in this adoption: 1) Find a local parent support group. There are several links here: [url=http://www.babysamson.com/resources.php]baby samson[/url] or you could probably call the children's hospital cardiac center and ask for the phone number for support group. 2) Make a contact with the members who have been mentioned here. 3) Or join a group like [url=http://www.hopeforhlhs.com]Hope for Children with HLHS - Hypoplastic Left Heart Syndrome[/url] and ask questions there. I know there are several parents in that group who are involved in the adoption community. And if you end up taking this girl in (many blessings to you if you do!) you would want to join the Hope for HLHS group. Good luck!

:thanks: Kidsheart1: Thank you! That was very informative and very helpful. I think you are right about my husband. I don't think any parent can handle their child dying. And that is a real possiblity with a child who has a heart condition. That is something we are going to have to real discuss before we make this comitment.

Well, I got the call today that she was already matched with another family. Though, if things don't work out then we are next in line. I pray it works out for her though. All that matters is that she has a home. :banana:

Well Hypoplastic left heart syndrome is an intricate and atypical heart defect present since birth. In this left side of the heart is critically underdeveloped. Doctors usually use an echocardiogram to diagnose this disease that would be beneficial for the children. I think you should seek an expert advice before making an informed decision. _________ Justsavelives Clinic - A New Lease of Life for People