Wednesday, January 07, 2009


My Latest Obsession
My latest obsession is rewarding yet depressing at times and of course it involves reading the ever addictive blogs so you know I am hooked. Anyone who reads my blog knows about Maddox. Maddox's mom, Tammi, is the sister of a co-worker. When Tammi was seven months pregnant with Maddox, the doctors informed her Maddox had HLHS or Hypoplastic Left Heart Syndrome. This is where the left side of the heart is either under developed or not developed at all. A series of three surgeries can be done to fix the heart depending on the severity while other require heart transplants. Tammi was told that if Maddox survived birth that he would only live a few moments. The Doctors said Maddox would need a heart transplant within the first few moments of life and it is rare that a matching heart would be available. Tammi and Manny were devastated. Her sister Brandi asked me to surf the net in hopes of finding answers. I did just that and found a hospital that agreed to look at her case as soon as she could get there. Tammi flew out the next day but due to insurance issues they were not allowed to treat Maddox unless the insurance was cancelled. Tammi could not take this risk in case she needed it for Maddox later on when no one would probably want to insure him. She found a hospital closer to home and finally had Maddox. A beautiful baby boy that underwent countless medical procedures and a few medical mistakes made by the doctors and nurses but he always came out with a smile on his face. I can't even count the number of times Tammi and Manny were told he wasn't going to make it through the night. Maddox was a medical miracle, living through things that even astounded his doctors. God had special plans for Maddox. I would call him Miracle Maddox. I can't imagine being told once that my children were not going to make it through the night and simply thinking about it makes me cry. I got daily updates on Maddox from Brandi and tried to stay up to date with all the HLHS info and his case. I was obsessed with this little boy and all things HLHS! It is odd how I had never even heard HLHS once before Maddox and yet found so many people affected by it on Blogger. I am now obsessed with all "heart babies" and often wonder what I can do. I pour over all of these blogs as if I know each one of them personally. Each successful procedures is exciting for me and I hold my breath for each outcome.

Sadly after several surgeries including his heart transplant in October (yet another miracle ~ he was only on the transplant list for one day!), Maddox passed away unexpectedly on Nov. 21, 2008. Just before leaving the room for a minor routine procedure Maddox gave his Daddy a "noggin" and a kiss and said, "Don't worry Momma I be wight back!" I can't imagine the devastation these young parents are going through especially when the procedure he went in for was only supposed to take a few minutes and he was doing so well. He was supposed to be home for Christmas! At that point he was fine or so they thought. Apparently Maddox was in severe organ rejection and no one knew. Maddox is missed and his family is understandably in an array of emotions. Tammi was pregnant with her second child when Maddox passed away and gave birth to their new healthy baby girl on Jan. 3rd, 2009. No one can replace Maddox EVER and he will NEVER be forgotten but I hope the new baby can at least bring some joy back into their life and maybe take their mind off of the pain if only for minutes each day. It is so sad to see her in a room FULL of family and friends and she is still so distant, in shock, in pain, in denial, angry and seemingly ALONE in her own world with just her and her memories of Maddox. I pray for her to find peace in this new world without her beloved son!

As I mentioned before I have found many going through the trials involved with HLHS then came upon Trisomy 18 and other heart babies. The numbers of cases astounds me and boggles my mind. How can we invent this crazy computer and talk to people all the way around the world but we can't cure defects and diseases of the human body? Maybe we should spend less money on electronic technology for now and erradicate heart defects, cancer and aids. Extreme I know but a girl can dream can't she!

Here are just a FEW of the heart baby blogs that I follow ~ go take a look at these babies who will go through more in their first month of life than most of us go through in a lifetime and they are all smiley happy babies! It will really put your problems into perspective!

Bela Grace, These Nine Months, Fearfully and Wonderfully Made, The Stanfield Journey, Anderson's Avenue, Lily's Angel Heart, Baby's Journey Home, Michael James Sheehan Irwin, Bring on the Rain and of course Mck Mama at My Charming Kids

I told you I was obsessed!!
Did I mention I am completely obsessed with Blogger??
I decided later on to also complete #2 on the Writer's Workshop list feel free to go read it too!


  1. Visiting from Mama Kat's...

    Wow. This was a thought-provoking post ... and I'm impressed with your selflessness and involvement in the lives of others. Thank you for sharing and you gave me some stuff to think about.

  2. It's always nice to read something like this that puts it all back in perspective. Thanks for sharing.

  3. That you are a champion for these heart babies is a real act of love. Thank you for making us more aware and sensitive to the difficulties others face, even in the first hours of life.

    Those are two handsome boys!!

  4. Oh my heart just breaks for your friend. No family deserves to hurt like that. Thanks for sharing this!


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