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Mackenna Rose Faith

HLHS, Heterotaxy syndrome; Fontan


Mackenna Rose
I found out about my daughter's condition during my first ultrasound. I have never been more scared in my life. My husband and I sat there in shock. We knew in our hearts that we would give her the chance at life for as long as we could.

Mackenna went through her first surgery at 5 days old. She had the Norwood procedure. She did really well but recovery was long due to her inability go eat and gain weight. After a month she was able to come home to join her big brother. She grew in leaps and bounds we were amazed by her will.

She had her Glenn procedure at 6 months of age, for which she did amazingly well and didn't need the heart lung bypass. Her hospital stay was 1 week and we were home and back to normal.

Mackenna is now 4 and had her Fontan procedure was back in October, it was the hardest surgery yet for our family. We were due to move from Connecticut to North Carolina due to my husband being in the military. Mackenna had been with her doctors for 4 years and there was no one else I wanted to do my angel's surgery. So in October we got ready for her Fontan we were hoping she would be there for a week do well and come home.

I remember being nervous because the surgery was taking longer then they said. When she finally came out and woke up she asked for gummy bears. Right then I knew Mackenna was ok if she was asking for candy! She did have complications with plural effusions and ended up having to go back in the operating room to put in a pacemaker because her heart rate kept dropping dangerously low. It was hard to watch her and try to explain to her everything that was going on. We were in the hospital for a month and our still dealing with setbacks from this surgery; however I have never seen her so pink in my life.

I'm so thankful for all the doctors who have helped get her this far. She has amazed us and given us so much joy. Her smile lights up my world and I know this little girl is destined for great things! I'm supposed to say that because I'm her mom...lol.. It has been a long road but I wouldn't have changed it for anything!

— Melissa, Mackenna's mom (eastern North Carolina)


This article was last updated on July 23, 2010

  • Born: May 4, 2006
  • Diagnosis: Hypoplastic Left Heart Syndrome (HLHS)
  • Treatment: Norwood Procedure, bi-directional Glenn Shunt, Completion Fontan


 

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Disclaimer: Our members' stories represent their own perception of their experiences, and the medical information contained within has not been reviewed for accuracy prior to publication. Stories are presented for informational purposes only, and should not be substituted for professional advice. Always consult your (child's) physicians with your questions and concerns.
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