CHD-UK©

Educating and Raising Awareness of Congenital Heart Defects
Home
About Us
What is CHD (Congenital H
Types of CHD and Operatio
Related Issues & Informat
Heart2Hearts Social Netwo
Contact Us
Personal Stories
List of All the Personal
Heart Transplant Recipien
Desiree versus HOCM
Louise and Co-arctation o
Thomas David Moore and Hy
Isaac Pry with Hypoplasti
Ezekiel Timothy Bruce - S
Mummy's Tale of (TGA) a b
Christopher with HRHS, VS
Zoe living with TGA after
Dounya and Atrioventricul
Stuart Watson with TGA aw
Helen Howarth's Story of
Mother and Son with Tetra
Jeni Busta HLHS Survivor
Victor living with TGA
Kate with dextro-TGA
Hilary living with TGA an
Sienna and HRHS, TGA and
Cordelia Griffin with TGA
Kurtis Cunningham and Wil
Charile - TGA and VSD
Emily-Jayne's CHD Story
Mother with 2 CHD childre
Rhys with four different
Tiana with Mitral Regurgi
Jeni Busta's Beginnings o
Heart of a Father
Nicole Borek with Tetralo
Stuart Watson after Heart
Charlie with Pulmonary At
Rob Ward - Life with Coar
Fathers daughter born wit
A heart mums letter to he
David Watkins
Cordelia and TGA
Ethan with Transpositiona
Isla-Rose and Dilated Car
Father and Daughter with
Thomas Ellis living with
What CHD Awareness to A M
Christopher Pena with lef
Iolan's Surgery Story
Colin - A Sweet Angel
Nisha Van Wyk an adult bo
Jacob D Thorley with Tetr
Harvey Castel-Nuovo born
Aaron's Life Journey...s
Olivia Ayris with Mitral
Xavier’s Heart
Trevor Christopher with T
Jessica Goffard living wi
Riley with Transposition
Tristan with Hypoplastic
Tyler Philip Kingston wit
Joshua Mark Kingston with
Alissa Grimes with Coarta
Tanesha's Fight with Comp
Niamh with Coartaction of
Logan has Pulmonary Atres
Caylen with multpile CHD'
Glebby living with Willia
Joel's Story of life with
Ellie M O'Neills Story: P
My miracle, Ben with Coar
Liam Matthew Hackett with
Zoe Chambers and Cardiomy
Luke with a complex colle
Joe Beechey with Aortic V
Catherine living with Tru
Our Amazing Grace
CHD Angels: A place of re
The ABC's of Congenital H
Ways you can help
Organ Donation - Transpla
E-Newsletter
Fundraising Events
Publications
CHD-UK's Flyers, Leaflets
Merchandise
Supported by
Site Map
Hilary living with Transposition of the Great Arteries and minor Stenosis of the Aorta

Hilary contacted CHD-UK in regard to her personal story and we thought which is in CHD-UK's 3rd Edition E-newsletter (April 2009) 

Hilary is the 14th Person in the WORLD to have had the Switch operation for Transposition of the Great Arteries (TGA).



Hi my name is Hilary Molenda I was born in February 1992 in Park Ridge Illinois. I was the first child of Mike and Mary. Shortly after I was born; I turned blue and had difficulty breathing. It was at that point that my parents were informed that I was born with a “broken heart”. After much medical diagnostic testing, it was determined that I had transposition of the greater arteries of the heart.

This is a condition in which the two main arteries (one carrying oxygenated blood to the body / one carrying oxygenated blood away from the body) of the heart are in the wrong spot, thus transposed. At three hours old, I underwent a cardiac angioplasty to reopen a small hole in my heart to allow oxygen to travel to / from my heart. It was the beginning of my life long battle with congenital heart defects.
 
Three days later I underwent open heart surgery. This procedure was the arterial switch. The surgeons switched the two main arteries of my heart, the pulmonary and aorta to the correct spots. The largest artery that the doctor switched was 3/8 inch in length. The surgery was a new procedure, only approved by the FDA in 1990. I was the 14th person in the world to have this surgery. I remained in the hospital for one month, recovering from open heart surgery. I was discharged to home with a large amount of cardiac medications.

On October 8, 1993, I underwent a cardiac catheterization to fully examine my heart. The doctors realized that I had a minor leak in the area where they switched the arteries. In addition, I had minor stenosis of my Aorta. The leak and stenosis were minor, so the doctors decided that I did not need any cardiac medication.

My childhood differed greatly from my typical peers.  My activity level was limited and I was unable to participate in any competitive sports. When I became ill, it was a major concern. I spent many days in my childhood on a lot of medication to combat any infections from settling in my heart. I underwent many tests that children typically do not have to do. My family worked hard to give me a typical childhood. However, I was often going to the cardiologist or in the hospital when other children were playing and having fun.

As a teenager, I began to develop symptoms of congestive heart failure. These symptoms included shortness of breath, palpitations, and being constantly tired. In 2008, the cardiologist decided that I needed to wear a holter monitor to measure my atypical heart rate. I wore this monitor to school and other activities. The results of the halter monitor lead to further testing, including a new procedure, an echnographic MRI. The MRI revealed that I now have a moderate pulmonary and aortic leaks and moderate aortic stenosis. I now will be followed by my cardiologist more frequently.

There are many things that I wish I could do like skydiving, riding roller coasters and running a marathon. I cannot do these activities because of my heart condition. I am very limited in what I can do and this bothers me terribly. It is hard for my friends to understand why I cannot participate in certain activities. Congenital heart defects are not obvious, so people do not realize the disabling effect that they have. I am a survivor who will fight for my whole life. However this battle is very difficult. I struggle daily from emotionally and physically dealing with my heart defect.

I often think about being a survivor of congenital heart defects and how my life is forever changed and different from my peers. I feel strongly that I have been given a significant purpose in life. My mom says that I was chosen to endure these challenges so that I can grow, develop, and change the world one heart at a time. My situations have made me stronger. These situations have made me appreciate and respect life at all levels.


CHD-UK writes: Such a lot to happen to someone so young but every CHD'er is a fighter.
Written by Hilary Molenda

Hilary Now