Apr 24
tiababu , Posted on SUPPORT NETWORK Blog

CHD Survivor grows up!

%u200B%u200BHi - My name is Betty de Aragon-  I am now almost 49 years old married with 2 kids ages 13, and 11. Right now my life is very busy with my career in sales, my kids activities, helping care for my 98 yr old dad and volunteering with AHA.   I was born in Ponce, Puerto Rico the youngest of 8 children.  At my first pediatrician's visit at 1 week old, my doctor heard a murmur. A the time in Puerto Rico, there was not a lot of pediatric cardiologist or resources for babies with cardiological issues.  As luck would have it, or a miracle from God, my parents had stayed friends with my eldest sister's first pediatrician who was  not a pediatric cardiologist in Boston Children's Hosptial.  With continued Blessings-- he had been planning to visit Puerto Rico on vacation.  He made arrangements with my pediatrician to see me at her offices.  I was diagnosed with Tretralogy of Fallot-- which is the most common congenital heart defect in newborns.
%u200BI was very carefully looked after for the first 18 months of my life, with an oxygen tank always near by.  At 18 months I was taken to Boston Children's Hosptial for my first surgery.  I had the Blablock Tussing Shunt performed by Dr Micheal Gross.  The BT Shunt was to "hold me over" until I was old enough and strong enough to survive the Corrective Surgery at age 5- also at Boston Children's hospital.   After my corrective surgery I continued visiting my cardiologist yearly and being closely monitored.  I was lead to believe I had been "corrected" and as I grew into adulthood no longer needed to visit the cardiologist.  I stoppped going to the cardiologist in high school.  I always knew I had my heart issues in the past, and was somewhat limited in my physical condition, but I enjoyed life and did everything my friends did.   It was not until more than 10 years later that I started to visit the cardiologist.
%u200B I started to visit the cardiologist to get my husband to be seen by a cardiologist for his high blood pressure.  The only way for me to get him to go was to go together.   THe cardio I was seeing did not specialize in adults with CHD.  I was his only CHD patient most his patients had high blood pressure like my hubby or were quite older.
%u200BI did not know I should have been seeing a CHD adult cardio or that they even existed.  I found out how big of an issue it is to have CHD when I was pregnant with my daughter.  My cardio had never had a pregnant patient and my obgyn nevery had a cardio patient.  My Dr.s were literally fighting on the phone on my planned due date, bc the ob would not perform my C Section without the cardio in the operating room and my cardio was in Disney with his kids.  Eventually a visiting cardio sat in during my C Section but it was extremely stressful.  When I became pregnant 15 months later, both Dr's dropped my as a patient.  My new cardio and obgyn specialized in only pregant cardio patients.  It was a huge difference. During my very 1st visit, the new cardio had me tested, and diagnosed me with Pulmonary Valve Regurgitation and correclty predicted I would need a Pulmonary Valve transplant within 18 months.  My labor and deliver was very stress-free with the right doctors.  And 18 months after the birth of my son, I had the predicted PVR surgery.    Since then I have continued to see my cardiologist religiously and volunteer with
%u200BAHA.  Thru my job I became in contact witht the Heart Ball and have worked with them in securing donations for the silent and live auctions.  I know considere AHA and Go Red for Women as my passion.  My passion led me to me selected as a 2015 National GO Red for Women Spokeswoman to continue to advocate and educate about CHD and Heart Health.  I know I have at least one more heart sue=rgery in my lifetime but am so grateful for my TOF because it is survivable- when many other heart defects are not.
religiously twice a year.

  • AHAASAKatie
    Welcome to the Support Network, we are so glad you are here, sharing your story with us! Best Katie
  • Raker
    YOU are a Fighter! Congratulations on being selected 2015 National Go Red for Women Spokeswoman. Thank you for all of your support and work for the AHA. My husband, mother-in-law, 2 grandmothers, and myself have heart disease.
  • cpapineau

    Thank you for your story. I am older then you but my story is similar.

    I am a TOF survivor and am facing a valve replacement in the next 6 month.  Can you give me some insight on how your recovery went?  Do you have arythmia's?  Did you have open heart surgery to repair your valve?

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