needing help making decision on hlhs baby

babynurselsa, RN · Aug 24, 2005

((((((((((((((((((HUGS))))))))))))))))

Bless your heart. I have only encountered 2 hypoplastic Left heart syndrome babies in my career. Those were both about 8 years ago. I do not believe that the Norwood procedure was available at that time.

I was fairly new and just remember that the only option being thrown out there was transplant if a heart became available.

You definitely have a tough decision to make. I hope that you have a good support system to rely on be it family, church members or close friends.

I agree if I were in your situation quality of life would have a strong bearing in my own decision. You need to make the decision that you feel is right in your heart, and regardless just love the little one every single second.

Good luck. You will be in my thoughts and prayers.

suzanne4, RN · Aug 24, 2005

They actually do a fair number of Norwoods where I am working. Which part of the US are you in? Have you actually spoken with a pediatric CV surgeon, or only the cardiologist?..........

Home Health Columnist / Guide · Aug 24, 2005

hope these websites help you:

hlhs

comprehensive site covering all aspects of congenital heart disease. from the

perspective of the patient, child, parent and practitioners who care for them.

www.pediheart.org/parents/defects/hlhs.htm

http://www.hlhsinfo.homestead.com/

Gompers, BSN, RN · Aug 24, 2005

{{{{{{{{{{ HUGS }}}}}}}}}}

You're right, quality of life is very important when making decisions like this. I've seen parents wait until the baby is born and then decide what to do - because sometimes those who wanted everything done see that their child is very sick and decide to just let nature take it's course...while others who decided not to do any surgery end up having babies that are very vigorous and are good surgical canidates. Research all you can, and try to have the baby at a hospital where there is a good pediatric cardiac surgery program in place. Then take it day by day and see where life takes you.

Best wishes...

Pediatric Critical Care Columnist · Aug 24, 2005

Since I started working at my present job three years ago, I have seen quite a few hypoplasts come through our unit. Some kids do really well following their Norwoods, but then have a very rocky course with their Glenns. It seems almost to be a rule of thumb that if they have a bad time with the Glenn, the Fontan will be worse. We've had a number of toddlers die post-Glenn, very chaotic deaths. I honestly don't know what I would do if it were me; I do know that parents need to make decisions based on what they feel is the best course for them, for their child, for the rest of the family and that they can live with forever. Get as much information as you can on the three stages of repair, the experience of the surgeon and the hospital, and try to connect with other parents in your area who have lived the experience. Those things will help you decide. Don't let yourselves be pressured into deciding on anything without being given the opportunity to fully understand. I wish you all the best.

Angie O'Plasty · Sep 18, 2005

I know I'm bringing up somewhat of an old thread here (for all I know you may have delivered already), but I just wanted to say something. I know it's a tough situation, and I understand your concern about quailty of life--it's true that with the Norwood the child will never have a normal heart. However, some kids do pretty well considering what they have to work with, and outcomes seem to be improving with these procedures. My gut feeling would be to go ahead and do it, and give the child the best chance you can. Another possibility might be to go on the transplant list, but understand that hearts are rarely available for infants. The advantage of a transplant is that the child would then have a normal heart, but then there's always the issue of rejection and all the meds they have to take and being immunosuppressed etc. I wish you the best with whatever you choose.

RainDreamer, BSN, RN · Sep 18, 2005

(((((HUGS))))) Best wishes for you all.

suzanne4, RN · Sep 19, 2005

I took care of a baby the other day, one week post Norwood, room air, and nippling feedings. If you did not see the pacer wires under his blanket, you would never have guessed that is what he had done. And this child was not even diagnosed until a few days after birth.

**RosesrReder, BSN, MSN, RN** · Sep 19, 2005

hello and welcome to the wonderful family of allnurses.com. enjoy your stay, and best of luck to you. :)

Shanna349 · Sep 20, 2005

I am a mother of a child born with HLHS in 2000- my entire reason for being a nurse.

If you pm me, perhaps we can discuss your options in more detail- afterall, whos a better pro at it than a nurse AND mother.