thread: Congenital heart failure

  1. #1
    BellyBelly Life Subscriber

    Nov 2004
    Chasing Daylight...

    Congenital heart failure

    Hi... thought I'd introduce myself.

    My second child, a son, was born with an aorta that was way to narrow and multiple large holes in his heart. He went into heart failure a few hours after he was born.

    The doctors told us he wouldn't make it.

    He had his first heart operation when he was 3 days old to repair the aorta and put in a temporary band to compensate for the largest of the holes in his heart.

    The band didn't work - it was supposed to last for a couple of years until he was stronger.

    He really struggled for each breath but after 3 months of intensive care, he had finally gained sufficient weight for his cardiologist to suggest open heart surgery.

    The surgery was done, and 10 days later he came home for the first time.

    He reminds us every day that miracles do happen. We treasure every moment we spend with him. He turned 2 today and is fighting fit.

    What makes this story more remarkable is that when I was pregnant, a scan showed that the left side of his heart hadn't grown properly. The doctors said he would die unless he received a heart transplant immediately after he was born.

    Subsequent scans in utero showed the left side of his heart had been healed and was the size of a normal baby heart. (We were very relieved, and the experts didn't suspect any other problems at that stage... they were only discovered after birth once the circulation system got up and running).

    I lived an hour's drive away from the hospital he was in, and had a 20mo daughter at home. I drove down to the hospital every day to see him, which was difficult, especially on his tough days.

    But I'm just so grateful to have the chance to get to know this little boy. He's beautiful. We named him "Zeke", a name we picked out before he was born and before we knew he would battle for his life. Zeke means "in the strength of God."

    I look forward to hearing your stories.


  2. #2
    BellyBelly Member

    Apr 2004
    Outer East, Melbourne

    wow - what a story and such a relief that things have turned out well, it would have been just awful to have to go home each night. Is this something you will have to watch out for in the future ?

    It's just amazing what goes on when you're pregnant, a friend had a scan at 18 weeks and it showed her unborn girl to have cysts on her brain, the doctor said at the time that they go away before birth and that there is no lasting effect. They did go away, and she's three now and fine.

    Apart from being two weeks overdue and my daughter not wanting to come out, I had an easy pregnancy.


  3. #3

    What an amazing story mistyfying and thankyou for sharing it with us. I am so glad that Zeke is doing really well now, and as you said it just goes to show miracles do happen.


  4. #4
    Melinda Guest

    That is a wonderful story....and as you said, it just goes to show that miracles do happen!!! I'm so glad that little Zeke is doing so well!!!

  5. #5
    Ex adm!n, quietly rusting....

    Feb 2004

    Wow, what an amazing story. Zeke certainly is a little fighter.

  6. #6
    BellyBelly Life Member

    Nov 2003

    Thank you so much for sharing that amazing story! I am so glad to hear that little Zeke is going so well!

  7. #7
    BellyBelly Life Member

    Jul 2004
    House of the crazy cat ladies...

    Hi MistyFlying, and welcome to BellyBelly.

    Thankyou for sharing your amazing story. What a terrible ordeal for you all to have to go through... but what an amazing and miraculous recovery your little boy made. I am so glad everything is going so well for him now.

  8. #8
    BellyBelly Life Subscriber

    Nov 2004
    Chasing Daylight...

    Thanks everyone.

    I just want to share my story in case there's someone else going through something similar. I know when Zeke was in hospital, a dear friend of mine who had previously seen her baby daughter in ICU for a few months only to lose her, was the one person who really *understood* what I was going through. She had been there and experienced the full rollercoaster of emotions and she provided excellent support.

    When Zeke was dedicated (christened) when he was 6 months old, she sang a song during the service called "Jesus loves me". This was the same song she sang at her own baby's funeral several years ago. What an amazing woman!

    Anyway, I hope to get to know you a bit more as time goes on.


  9. #9
    Our castle is now full

    Nov 2004
    Western Australia

    Thank you for sharing your beautiful story. Little Zeke must be the light in your eyes.


  10. #10
    Senior Moderator

    Nov 2004

    Isn't it amazing what these little miracles called children can do.

    It's obvious that Zeke was just meant to be here, and loving him is the absolute best thing that you can do!

    I am constantly amazed at the help that comes from the NICU staff. They were marvellous when Alex was in hospital.

    I was very moved by your story!


  11. #11
    BellyBelly Life Subscriber

    Nov 2004
    Chasing Daylight...

    Zeke has regular (yearly) cardiology check ups to make sure the repairs are growing with the rest of his body (so far, no probs).

    He'll also have a post-surgery check up by the surgeon in February next year.

    And he'll be visiting an ENT specialist twice a year to monitor his vocal chords. (When they operate on 3 day old babies' aortas they sometimes nick a vocal chord by mistake... you can imagine the size of what they're working with in there!) He sounds fine, but I signed him up for this specialist's PhD study... I guess it's our way of saying thanks to the medicos who worked so hard to save his life.

    Mum2boys - I love hearing stories like yours too. Those "full-on Christians" make a difference, I reckon.


  12. #12
    JoDan Guest

    I have a friend who's son was born with congenital heart disease/failure along with a hole or two as well. He had open heart surgery a day or two after being born.

    He was such a fighter, and had many operations over his lifetime. His lifetime expanded over 13 years I think it was. He was also diagnosed with diabetes a few years ago, which didn't help at all.

    There are many wonderful and funny stories to be told about this little boy and his strong life he led.

    I hope that Zeke has a life as rich as Justin did, full of life, love, laughter and the biggest spirit ever.

  13. #13
    BellyBelly Life Subscriber

    Nov 2004
    Chasing Daylight...

    Thanks Jo. He's an amazing little 3 year old now. Full of beans and chats non-stop. We love him to bits.