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Maribeth Poole: HLHS, 33



Maribeth Poole, HLHS, 33, Dallas, Texas, CHOP, born with, half heart, 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, trailblazers, experts

My name is Maribeth Poole. I was born in Dallas, Texas on April 30, 1985. Two days later, my parents were getting ready to take me home to begin our lives as a family of three. During a routine wellness check, the pediatrician heard a heart murmur. He told my parents not to worry because it was common, but they were going to have a pediatric cardiologist come check it out to be on the safe side. After some testing and taking an actual look at my heart, the cardiologist diagnosed me with Hypoplastic Left Heart Syndrome. They told my parents the left side of my heart did not fully develop, and that I was not receiving enough blood to my body. My parents were told that there was not anything that could be done to correct this, and that I would die in about a week. They were given the option to either take me home or leave me at the hospital. As devastated as they were, they refused to give up hope. They took me home and began to earnestly pray for a miracle.

After much research, and long distance phone calls, my parents were notified of Dr. William Norwood. Dr. Norwood was beginning to develop a surgery to correct the hearts of single ventricle patients. After realizing it was either this, or allow their child to die, my parents Care-Flighted me to the Children’s Hospital of Philadelphia and I had my first open heart surgery at the age of nine days in May of 1985. After about a month long stay, we came home to Texas. In October of 1986, at 18 months old, I went back to Philadelphia for the second stage of the operation. At the time, I was around the 16th person to have both open heart surgeries, and around the 11th person to survive them. After about another month in the hospital for recovery, my parents and I returned to Dallas.


Maribeth Poole, HLHS, 33, Dallas, Texas, CHOP, born with, half heart, 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, trailblazers, experts

I have a younger brother and two younger sisters who are all heart healthy. I grew up knowing my heart was different, but my parents did not treat me any differently. They allowed me to do things I wanted to do without hovering over me every single minute of every single day. They allowed me to participate in city league sports in elementary school and try out for sports in middle school. After graduating from high school, I went off to college to earn a degree in family and child development, and I am now in the middle of my tenth year of teaching. I have been married to my amazing and supportive husband for four and a half years.

I am currently taking two prescriptions, lisinopril and a baby aspirin. I try and eat as healthy as I can, but I would never label myself a health nut. One thing I do well is drink a ton of water throughout the day. I don’t exercise as much as I should, but when I do, I’m try to walk one to two miles a day and do very light weight lifting. I see my cardiologist no more than once a year and he’s always pleased with how well my heart is looking.

In our free time, my husband and I love hanging out with our friends, working with the youth in our church, and going back and forth to Dallas, Texas or traveling to Atlanta, GA to visit our families.

I am not able to physically have children, so my husband and I are praying about starting our family through the adoption process. We know the Lord has some amazing things in store, and we are anxiously waiting for Him to reveal to us the next step. Psalm 139:14 says, “I praise you, O Lord, for I am fearfully and wonderfully made; Your works are wonderful, I know that full well.” This is one of my favorite Bible verses of all time. It is a wonderful reminder that my broken heart was not a surprise to the Lord. The anatomy of my heart was not an accident, and the Lord has an amazing plan for my life.

A lot of people ask me what I would change about my life or growing up and I always answer with, “absolutely nothing!” Though having a severe congenital heart defect is not ideal, it doesn’t define who I am. Only the Lord can do that!

The number one advice I always try to tell parents of CHD babies is to allow your child to live the life they were meant to live. Unless they have been given strict orders by a doctor, you are going to have to let them learn their own limits. I promise you, it will be okay. Also, ALWAYS advocate for your child!

Growing up, my parents and siblings were my number one cheerleaders. They still are, and now I am surrounded by my husband and amazing brothers in law as well! I am an open book when it comes to living with a CHD/HLHS. I love to connect with other families and answer any questions you may have along the way.

My e-mail is maribethpoole@gmail.com.

You can also connect with me on Facebook: Maribeth Poole

Instagram: Maribeth.poole


Maribeth Poole, HLHS, 33, Dallas, Texas, CHOP, born with, half heart, 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, trailblazers, experts


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