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Elizabeth Webb: Single Ventricle, 32

Elizabeth Webb, single ventricle, born with, VSD, Pulmonary Stenosis, TOF, tetralogy of Fallot, Coarctation of the Aorta, COA, D-TGA, pulmonary atresia, pulmonary hypertension,  Nationwide Children’s Hospital, Lucile Packard Children’s Stanford, St. Joseph's Hospital, Arterial Switch, doctor, Glenn, Fontan, Norwood, doctor, transposition of great arteries, vessels, left superior vena cava, patent ductus arteriosus, truncus arteriosus, ebstein's anomaly, warrior, digeorge syndrome, down syndrome, heart transplant, donor, organ donor, survivor, HLHS, HRHS, TGA, complex chd, Hypoplastic Left Heart Syndrome, Single ventricle, Congenital Heart Disease, Congenital Heart Defect, service dog, Stephanie Romer, chd adult, chd baby, chd, wheelchair, disability, disabled, ng tube, icu, UCLA congenital, Ahmanson, Kurt Daniels, Joel Hardin, Texas Children's Hospital, tachycardia, bradycardia, pregnancy, abortion, OHS, open heart surgery, heart surgery, heart disease, AHA, american heart association, project heart, adult congenital heart association, ACHA, PCHA, heart gala, CHD Legacy, blog, Voices of CHD, chdlegacy, one story stronger, onestorystronger, stories, news, miracle, hearthub, heart hub, scars, scars are beautiful, rock your scar, bullying, advocate, speaker, jimmy kimmel, ed helms, katherine heigl, billy kimmel

I was born in 1986 and all was expected to be as normal as any baby could be. Instead, I had several complex congenital heart defects including a single ventricle with double inlet left ventricle, transposition of great arteries, persistent left superior vena cava, patent ductus arteriosus, and more.

All of my surgeries have been at Texas Children's in Houston. The Fontan at age 3 ½ and the Fontan Revision at 28. It’s been almost 4 years since my Fontan revision and I’ve got a good grasp on my health.

I’ve learned to listen to my body, know when it needs rest, and how my heart has impacted other parts of my health. I’ve started to have my liver watched through findings at TX Children's and so far, my liver looks great.

I am currently only taking a baby aspirin and Propanal every day to manage my Tachycardia. I drink water like it is going out of style! I also get very hungry and constantly have to have snacks. I follow Trim Healthy Mama eating plan and my blood work has never looked better! My only form of exercise is chasing around two toddlers. I play with them, go to parks, and walk lots but I do not have a formal exercise plan.

I work full time 40+ hours a week. I am involved with our church and a great community as well as involved with my alma mater. I have a 2 year old (biological) and 5 year old (adopted) and both have kept me going strong.

When I do have a free moment, I love nothing more than to read a good mystery or watch a great football game.

Over the years my energy levels have declined but I thought it was just because I was a new Mommy.

When I went into afib and had to be life-flighted, it brought to light that my fatigue was not normal. After my Fontan Revision, I could not seem to feel better. In fact, I felt like my energy was declining just like before surgery. I final wrote a note to my doctor but before I could send it, I took a pregnancy test just to be sure.

Surprise! 12 weeks after OHS I was expecting.

Our son was born one year to the day of my Open Heart surgery. Once my Fontan revision was complete and surprise pregnancy came to an end, my energy levels went back to normal. Our family of four is complete and we are so thankful that God brought us where we are.

Over the years I have learned that I need to take more responsibility in managing my CHD. Embarrassingly, up until a couple of months ago, I could not accurately tell which congenital defects I had.

My cardiologist has helped me feel empowered and I know signs to look for in daily life. I live almost 4 hours away from my doctor and hospital yet, with new technologies, I can send in a pacemaker report if something feels off or email a quick question. I am so thankful for Texas Children’s as well as for parents that never told me I couldn’t do things.

I grew up and played roller hockey, played in the marching band, was feature twirler in college and more. All things that someone with half a heart “would never do”.

I love encouraging parents who might be scared of a diagnoses that God has great plans for them and their child too!

Facebook: Elizabeth Webb

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