May 25
heartwarrior1987 , Posted on SUPPORT NETWORK Blog

Living With CHD- A Daily Struggle.

Hello- I would like to introduce myself, my name is Samantha and I am 28 years old and have been living with CHD since I was 45 minuets old. I was born December 8,1987 at Cabell Huntington Hospital, in Huntington, WV; I was the first born to Fred and Becki Davis, both from Huntington. My mom is a registered nurse at St. Mary's Medical Center and my dad is a funeral director at a local funeral home, we have a lot of inside jokes in our family. :) My mom had a seemingly normal pregnancy with me, I was due November 25, but decided to cook a little longer. After I was born, she said I looked "blue", but she told herself, that she was wrong and that nothing was wrong with her babygirl. Well, they always say a mothers instincs are right, sure enough as I was being transported to the well born nursey, Dr. Joe Werthammer stopped the nurse and asked who's baby this was and where they were taking me, they immeditaley made a detour to the NICU. 45 minuets later my parents heard the news that NO parent wants to hear "something is wrong with your baby".  I had some heart defects, one of which was Transposition of the Great Arteries. The 2 main arteries in my heart theyre backwards, causing oxygenated blood to be mix with oxygenated blood. Thus the name, ‘Blue baby’.
Understandably, my parents were scared to death. Within 24 hours, I was ground transported to WVU Children’s Hospital in Morgantown, WV. They were in their car right behind my.
I had my first heart cath when I was two days old. At that time the doctors tmye discovered I had 3 more defects in my heart. I had a Ventricular Septal Defect (a hole between the the bottom 2 heart chambers) and I had Coarctation of the Aorta (a narrowing in my aortic arch). I also had Pulmonary Stenosis, which is a narrowing in the pulmonary artery. During the cath the doctors made anotmy hole in the upper chambers of my heart so that the blue and red blood could mix. This was done to give me more oxygen. Needless to say, no one was even sure if I would make it out of the hospital.

The next day, I had my first open heart surgery. They fixed my narrowed aortic arch by putting in a small Dacron tube to allow blood to flow more easily. At 10 days old I my 2nd surgery. Because of the anatomy of my heart, the left side of my heart was pumping blood back into my lungs causing fluid to build up They did what is called a ‘pulmonary banding’. They put a band around my pulmonary artery to restrict that extra blood flow. This procedure was done to allow me to grow and gain weight to get me stronger for my ‘big’ surgery.

When I was 21 days old, they discharged me from the hospital and my parents were able to take thier baby girl home. What a joyous day it was! But boy, were they scared. They had been surrounded by doctors and nurses and they were their “comfort’.
I grew and gained weight and at 10 months, I underwent my 3rd surgery. Once again, we were off to WVU, my Dr. Robert Gustafson did my ‘Arterial Switch’. This was done to correct my aorta and pulmonary artery that was ‘backwards’ at birth. They then told my parents I had a 3% chance of survival. I was the 1st child at WVU Children’s Hospital to have this procedure done. I was in surgery for 13 hours and came out with flying colors due to a wonderful surgeon and hospital team, and a lot of prayers throughout the United States.
Since that time, I have continued to do well. As time has passed, due to scarring from previous surgeries and from just growing, everything has needed upgrading. At age 4, I had a fourth surgery to reconstruct the narrowed pulmonary artery. In the summer of my 5th grade year, I once again had my pulmonary artery reconstructed to adult size. They knew that I needed this enlarged because my blood pressure had been on the rise. That was corrected with this surgery, which was surgery #5.
In the summer of the 6th grade, I underwent surgery #6. They reconstructed the aortic jump tube that was fixed when I was 3 days old. It was also enlarged to an adult size tube.

Today I am a typical 28 year old , I go up to Morgantown, WV every year for a checkup. In February of 2015 my fiance' and I found out we were going to be parents!  I scheduled to have a ultrasound in Morgantown because that was I was going to deliver and I was already up for my cardiology appointment. On March 3rd  I found out my baby had no heartbeat. I was heartbroken. I was scheduled the next day for a D&C; upon admitting me into the hospital my blood pressure shot up to 200/88. I was at stroke level. Since my miscarriage, I had an unsuccessful cardiac catheterization at Nationwide Children's in Columbus, Ohio.  I am down to working 4 days a week, and struggling every day to get out of bed just ot come to work. My blood pressure is controlled by 4 medications that I take twice a day. Living with CHD, you may see me and think nothing is wrong with me because I look perfect, but on the inside I am a hot mess. Everyday I go home and take at least a 2-3 hour nap and I am still in bed by 10:30 every night. We are now waiting to hear from my surgeon to find out where  I am going to have my 7th open heart surgery. My surgeon is calling and consulting with Nationwide, Pittsburgh, Boston and Mayo Clinic. Thank you for taking time and reading my story. I am on facebook at I am also on instagram J I love meeting people and sharing my story with the world. I am truly a living miracle. 
  • sharbaugh
    Prayers to you. My son was also born with CHD. He is 15. And has a total of 7 heart defects. SIngle Ventrical Pulminary Atresia, TPA, ASD, I always tell him he is a true miracle. I always appreciate hearing others share their story. He often feels alone with his defects, and its nice to show him others who have gone thru the same thing. He has had 4 open heart surgeries. I also lost a baby at 17 weeks, no heart beat. There are no words I can tell you that will comfort you that loss. But my thoughts and prayers are with you as you go thru it. I will prayer for your drs as you go thru your 7th surgery. Best wishes to you of a lifetime of happiness!
  • bluerose623
    I am following your story you are such an inspiration .
  • heartwarrior1987
    Thank you so much Sharbaugh. I remember often feeling alone as well growing up, I remember thinking no one understands me. PLease let your son know that I would love to talk to him and get to know him, I am on facebook if he would like to add me. Thank you for the prayers for the upcoming surgery. God Bless
  • heartwarrior1987
    Thank you Blue rose.
  • connectcare
    Thank you for sharing your warrior attitude. I am seeking heart surgery (ies) survivors whom have experienced a Near (Brief) Death Experience, also.
  • DEZRAE68
    thanks for are truly a warrior!! stay strong and keep fighting, god bless you always....
  • heartwarrior1987
    Thank you Dezra. Check out my facebook and instagram page as well :) Links are above.
  • jackiec504
    Samantha! What an amazing story! I was also born in 1987, but wasn't diagnosed with CHD until 2 months old. I've met a lot of survivors, but none my age. I was born with aortic valve stenosis/bicuspid aortic valve which over time caused my ascending aorta to widen. I had open heart surgery at 22 to repair my aortic valve and replace my ascending aorta, so I also have a piece of dacron in me! You are a true inspiration.
  • wh
    You are an INSPIRATION! Stay strong...Your story is a big help to people!
  • Bevrly
    Thank you for sharing your story. So sorry to hear of your problems. I have mitral valve prolapse from Rheumatic Fer when I was 11 but really no problems and I am 85. I hope they can find new medical procedures that will fix your problems. You are too young yo have all those problems.
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