UCLA and HLHS in the News

Thanks for all the notes and comments.  At some point we’ll have to get on a longer “how we’re feeling/what we’re thinking” post in light of the recent developments, but in the meantime the holiday season gives us lots of things to enjoy.  We’ve got some posts coming on the fun we’re having.

I appreciated a Rudy’s Beat fan (thanks, Christie!) who forwarded me this NPR link about a long-term HLHS survivor.  If one hero isn’t enough, you’ll probably recognize a second, Dr. Brian, who gets interviewed below.  The impasse we’re at with Rudy’s condition can give rise to all kinds of questions in our heads.  I’m glad one of them is not whether we’ve got the best team.

10 thoughts on “UCLA and HLHS in the News

  1. This one made me cry – it is long past time for a ray of sunshine and this article provides that and then-some. Doesn’t sound like she ever had a ‘glenn’ procedure, either. Enjoy every bit of these holidays, THEN reflect. :>) I know it’s always there, lurking in the corners of your minds. Of course it is. But listen to the laughter of all of your kids, sing songs, pound the Christmas drums – do what you all do so well: live life with joy in the moment. It’s all any one of us really has – as you know so very well, there are no guarantees of longevity/health or even happiness, as the world defines it. But joy – oh, yes! JOY. Thank you, Jesus for moment-to-moment glimpses of glory.

  2. What a wonderful article, and think how long ago it was when she had her procedure!! Hoping new techniques are just waiting for Rudy to try them out for size…

  3. @Diana…back then they didn’t have a hemifontan or a glenn. It was just the Norwood then the Fontan. This caused a lot of complications so the hemifontan and then the glenn were developed. They also used to do the fontan earlier but it caused complications (like the stroke my son had 12 years ago). They now do it later.

    The doctors have learned so much from kids who had the surgeries early. It’s pioneers like Jeni who pave the way for new developments in care. There are new developments all the time that can help.

    I continue to keep Rudy in my prayers and for medical knowledge to evolve in a way that can help him too.


  4. Jeni’s photo and story helped me to see Rudy standing there all grown up and talking about being married and living an almost normal life. There is such hope for little Rudy…he’s a fighter and we have a God of miracles involved in his life! (Not to mention an outstanding medical team!) Praying you all are being lifted into joy by our prayers.

    You are so loved…by SO many!!!

  5. Thank you, Kathy, for that information – there is so much to know/understand/
    grapple with when one lives with this syndrome – and I am more sorry than I can say for your son’s complication. Christmas blessings to you and your family.

  6. This is such a sweet article! It’s very encouraging to see the stats for babies at UCLA. I hope you were as encouraged as I was.

  7. The article was so interesting!!! It’s so comforting to hear the testinomial of an adult “half-hearter”….she’s quite the inspiration!!

  8. Loved this story and pray that Rudy does even better than she is doing with her heart now. Have a Merry Christmas. Hugs to all.

  9. gave a few hours this past weekend for Kisses for Katie, thought of Rudy and all the HLHS kids…..prayers go out to all the families; very special people in my heart……Nick’s Grandma

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