Mended Hearts Open Forum

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My Daughter

  • 1.  My Daughter

    Posted 05-28-2019 17:41
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    Hi Everyone! My name is Melia, and this is my daughter who is a Little Mended Heart Warrior. Almost a year ago, when she was barely 9 months old, she had open Heart Surgery to repair her congenital VSD and since then she's been struggling with Cardiomyopathy. I'm joining this group to try and learn what her life might look like down the road. She was born with a rare genetic condition called 6q26q27 Chromosomal Deletion and has had 3 other major surgeries on other parts of her body, specifically her brain and eyes. She's a warrior in every way and I learn so much from her. She's now almost 2 yrs old.
    Thank you for allowing me to be apart of this group. I hope to learn a lot.

    Melia Mullenaux
    Thatcher AZ

  • 2.  RE: My Daughter

    Posted 05-29-2019 07:29
    Hello, I feel deeply for Melia, she truly is a gift. I will pray for complete healing for her and strength for you and your family. God bless 

  • 3.  RE: My Daughter

    Posted 06-12-2019 18:26
    Hello Melia,

    Thank you so much for reaching out!  I'm sorry to hear that your daughter was born with a congenital heart defect and has other challenges with her rare condition.  I was also born with a congenital heart defect - Tetralogy of Fallot, involving four heart anomalies.  VSD, pulmonary stenosis, over-riding aorta and right ventricular hypertrophy.  I'm 52, so surgery wasn't done as early back then.  I had a shunt at about 1 1/2 years old to hold me over for my open heart surgery at 6 years old.  My surgery was very successful!  Before my shunt, I had blue baby spells due to lack of oxygen.  Before my surgery at 6, I was often short of breath and would squat to help breath better.  After my surgery, I was able to do many things like a typical kid and have had a very good life!  I also was able to deliver two babies naturally, with the oversight of high risk pregnancy doctors.  About five years ago, I started to notice that I was having heart palpitations.  With the heart monitor, it was determined that I was experiencing Atrial Flutter, not quite A Fib.  I take a beta blocker and so far it is helping to decrease the Atrial Flutter and ward off more serious arrhythmias.  My doc is watching my pulmonary valve as it leaks and might need to be changed someday.  But, I think that going all these years without further surgery is a blessing so I am prepared for more surgery if needed.
    The best advice that I could give is for your daughter to remain under the care of cardiologists that understand congenital heart defects.  I have been going to the same Children's Hospital in Pittsburgh my whole life!  The docs have advised me to not seek out an adult cardiologist but to stay with Children's and many Children's Hospitals have added Adult Congenital Heart Clinics.   Here is the directory that shows ones in Arizona.
    Regular check ups with doctors that know what to look for in us kids who grew up is the best way to prevent problems or to treat them quickly in the right ways.  I am so thankful to have doctors that are committed to helping us as we age.  And I am so thankful that through the years, doctors have learned so much and can give babies a better chance by doing surgeries earlier and with improved methods.  I am very hopeful for your little girl!  This forum has been great for me too.  It's good to hear stories of hope and coping mechanisms and to know that we aren't alone in our trials.
    I'm an early intervention teacher and I provide home therapy for 0-3 year olds.  I have experience working with babies who face many challenges and I have been so inspired by them!  I have also been inspired by their families!  Little ones tend to develop best when they have a supportive family.  It makes a world of difference!  So, thank you for being a GREAT mom and reaching out and learning all you can!  It will truly be a blessing to your daughter!

    Tina Marshall
    Cranberry Twp PA