hypoplastic left heart syndrome

  1. thought i would log in and post an update on my great nephew. he was born on january 3rd. everything possible was done, and after he spent from the 8th to the 23rd on ecmo, the decision was made to withdraw support and he did not survive. his passing was sad, but everyone felt that they had done everything that they could. thank you all for your honest answers to my questions concerning hlhs. my family only had GREAT things to say about the nicu and ppsicu nurses that took care of this little soul. don't know if you all get recognized often enough for the tenderness that you show these little babies and their worried families. THANK YOU.....cokie
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    About cokie

    Joined: Dec '02; Posts: 118; Likes: 1


  3. by   debyan
    So very sorry for your pain. deb
  4. by   Heather333
    I'm so sorry for your loss. You are in my thoughts and prayers.

  5. by   kids
    Thank you so much for the update, even tho it is a sad one... I have thought about you, your family and the baby several times over the past 6 weeks or so. Ironicly, after giving you all of the info on HLHS, my Grandson was born with transposition of the great vessels on January 4th...we (thank God) have had a positive outcome.

    I am so sorry for you and your family's loss.

    Last edit by kids on Oct 6, '04
  6. by   cokie
  7. by   cokie
    sorry about the testing, but yesterday i typed a big long letter on here and then lost it, because i wasn't logged on. i think i have it figured out though. it's when i go directly from my inbox on hotmail to here instead of logging in directly that i have to keep logging in. anyway...thank you all for your heartfelt responses. glad to hear that others have had a good outcome with their surgeries. i have strong religious beliefs, and i believe that this baby was such a special little soul that he gets to go right back, and does not have to be tested here like the rest of us. of course it is hard on my neice and nephew (it was my nephews baby), but they seem to be very strong. they are blessed to have a healthy 14 month old daughter right now, whom tests have shown to be have no heart problems. they are probably not going to have any more children as they have been told there is a strong possiblity that they will have another child with this problem. any thoughts???? since i returned from the funeral one of my co workers on post partum told me of a friend of hers, a pediatric surgeon, who gave birth to a baby with hlhs, and decided to just take it home, and let nature take it's course. i guess knowledge can make one do this. this person told my co worker that these children have short life spans. is this true. well, my letter yesterday was so much better than this one, but it is gone in electronic neverland.....thanks again to all nicu nurses and picu nurses, not sure i could do your job.