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Hypoplastic Left Heart Syndrome (HLHS)
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One of the difficult things about receiving your baby's diagnosis of HLHS during pregnancy is telling friends and family.  Naturally, they will be very concerned about you and the baby, and will probably ask a lot of questions.  This can be tough since you are dealing with the emotional aspects of finding out there is a problem with the baby, and you won't have all of the answers. 

One thing you can do that is extremely helpful is to notify your friends and family of the baby's condition by designating someone to call them for you, or by sending out a letter or e-mail explaining the situation. This way, you will not have to repeatedly answer the same questions and it gives them time to deal with their own emotions before talking to you. 

It may be helpful to pass along some of the resources you have found to help them understand the condition better.  This will save you from trying to explain the complexities of the condition and surgeries, and allow you to concentrate on deciding which surgery and hospital is best for your baby. 

Don't be surprised if you don't hear from some people.  It is not that they don't care  it's just that some people don't know what to say, or they want to give you space.  In addition, you may sometimes feel overwhelmed and not want to talk.  That's perfectly fine.  Let people know when you want to talk about it and when you're not up to it. 

Your friends and family will want to help you but will probably not know how.  If at all possible, think about what would be most helpful to you at this time and don't be afraid to ask for their assistance.  People always feel better when they know how they can help.  Here are some ideas of things people can do for you: 

-- Find other informational resources on HLHS
-- Watch your other children (if any) so you can make phone calls or go to appointments
-- Make phone calls for you
-- Go to appointments with you
-- Help out financially or organize a fundraiser for you if you will be traveling or need to cover certain costs
-- House/pet sit if you are going to travel
-- Clean your house
-- Make prepared dinners for you
-- Organize a blood drive - either for the general pool, or for a directed donation so that blood donated can be used for your baby's surgery (ask your physician about directed blood donations.)
-- Throw a baby shower for you, if you would like.  Some parents decide that they prefer to wait until the baby is home and then have a baby shower/welcome home party.  Others want to proceed as normal and have a baby shower while pregnant.  Make sure that you make your wishes known to family and friends, whatever you decide.

Other Support
Talking with other parents who have a child with HLHS can also be very helpful at this time.  You can ask the hospitals for names of parents you can talk with.  That way you can also learn about their experience at that particular hospital.  The hospital may also be able to put you in touch with local support groups in your area.

For a list of support groups worldwide, as well as online support groups, see The Children's Heart Information Network or send us an email at contactus@HLHSinfo.org.
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This web site is not intended as medical advice.  Please consult your physician with any questions you may have regarding your child's condition.

Copyright © 2001-2011 D.L. Hilton-Kamm, all rights reserved.