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Maribeth's story told from her perspective.
I was born on April 30, 1985 in Dallas, TX. Two days later, the doctors informed my parents of a heart murmur they had heard and assured them that it was probably nothing; they just wanted to check and make sure before sending me home. A few hours later, the doctors returned to my mom's hospital room informing them that the heart murmur was more serious than they thought. The told my parents that I had a congenital heart defect known as Hypoplastic Left Heart Syndrome which meant my left ventricle did not fully develop so the amount of blood circulating my body was slim. They gave me about a week to live. My parents were told that there was nothing they could do to correct this defect and that I would die peacefully in my sleep. They gave my parents the option of taking me home or keeping me in the hospital for the next week or so.
Praying for a miracle, my parents took me home. Numerous friends and family members came to Dallas to say "hello" and "goodbye." Around day 5, my aunt went to her school library and began reading all books she could on heart defects. In an article of Reader's Digest, she came across a story on a Dr. William Norwood who had come up with a surgery to try and correct the hearts of babies born with HLHS. After many calls to different doctors/hospitals/surgeons, etc., my parents got in touch with Dr. Norwood who assured my parents that I was a candidate for the surgery. At the time, the survival rate was about 20%. They couldn't make any guarantees other than they would do their very best. All of this information was made by day 7. My parents decided that if I lived through the night, we would go to Philadelphia for the surgery. The morning of day 8, my parents were woken up by a phone call from Philadelphia to see whether or not we were coming. Seeing that I was still breathing, my parents said, "yes" and that afternoon I was CareFlighted to the Children's Hospital of Philadelphia. I underwent the first stage of the Norwood procedure in May '85 at 9 days of age. After surgery, I was in the hospital for about 5 weeks before returning to Dallas.
I went back to Philadelphia for the second and final stage of the Norwood Procedure at 18 months in October '86. At the time, I was the 16th baby to have the entire operation completed and the 11th to survive. Of those 11 survivors, about half of them have passed away due to other complications. After about 5 weeks of recovery, I returned to Dallas and have lived a more than normal life for a child with HLHS. I have a younger brother and two younger sisters. All three of them have healthy hearts. Up until 1994, I would go back to Philadelphia every other year for a check- up. I began seeing a cardiologist at Children's Medical Center of Dallas in 1994 and then switched over to another cardiologist at Medical City beginning in 1999 and have been seeing him ever since.
The summer of '99, my cardiologist at Medical City ran a stress test on me. Being his oldest surviving HLHS patient, he recommended that I not do athletics in high school and restricted me from participating in any rigorous exercising. His whole theory was, "Your heart's been working this well for so long, why do anything to cause it to stop?" He also put me on a low dose aspirin and another medication to stabilize my blood pressure. Other than that, I'm perfectly fine. I graduated from high school at the top half of my class in 2003 and had no trouble in college. I graduated from Stephen F. Austin State University with a degree in Family/Child Development in August of 2007.
This next school year I will begin working with middle school special education students. I see my cardiologist once a year and have always come back with a great report.
Maribeth and her dad today
11 comments:
Hello Galligans,
My family and I are soo very happy that you are doing well. We have a daughter that was born in 2007 with HLHS. It has been a wild ride but she is doing great. She has a website here on Blogger, feel free to visit Sasha's website, we keep it going for everyone to see. Hope to hear from your family. www.babysasha.org
The Embry's
My son has HRHS. He had the Glenn a few months ago and is doing great but when I hear stories about other kids who start to have problems later I can't help but worry. This story was exactly what I needed to hear. Thanks for sharing. God bless.
My son has HRHS. He had the Glenn a few months ago and is doing great but when I hear stories about other kids who start to have problems later I can't help but worry. This story was exactly what I needed to hear. Thanks for sharing. God bless.
My name is Josh Olson I have HLHS, I'm 23 I'm a survivor of The Norwood Procedure, I was born in 1990, thank you I thought I was the last
My daughter was born in May 2009(4yrs old) with HLHS and I can relate to all the tough times,my daughter is doing well thank God,but she still has to have her meds(Enalapril,Lasix,&1/2 aspirin), so when I read about other families experiences it really gives me hope and enlightenment.
Hi Josh glad to see an older survivor of HLHS,my 4 year old daughter was born with the CHD,so you are a inspiration.
Hello! What a great blog and hope all is going well as each year passes. I'm a 34 year old HLHS survivor born in 1979 and back then there was only the Blalock-Taussig Shunt and Fontan.
Have you been made aware of the future issues for example the liver?
It's now 2018, and I was wondering if everything health was was still doing well with you. My son Ryan will be 14 and has had for open heart surgery and one heart attack, Unfortunately.
It's now 2018, and I was wondering if everything, health wise, was still doing well with you. My son Ryan will be 14, and has had four open heart surgeries and one heart attack, Unfortunately.
Unfortunately they don't give you the option to edit, so I just did the edit myself lol.
My name is Jerri-Marie and I'm 13 going on 14 years old. I been living in Atlanta Ga since 2013. But I was born 2004 in Miami with HLHS. I've gone through all three surgeries and I haven't had any complications since my surgeries.My only issue is when I catch a cold my Mom has to make sure it doesn't linger or I don't get really congested because my lungs need to stay clear since they're being used to help oxygenate my blood. My Mom always my internal plumbing has been rerouted so my lungs now play the part of my missing oxygen chamber. She also calls meva miracle Baby.We all are Miracle babies. I was reading up on my condition for a report in school.I was researching to find the oldest person living with my condition and came across this blog. I decided to reply because I wanted to encourage you by telling you the story of me living with HLHS and thus far living a healthy normal teenagelife.I don't take P.E. or participate in any sport that will be hard on my lungs or Heart. However love singing and dancing. I'm in honors chorus and on the Dance team. I haven't been hospitalized since my last surgery at 4. Whenever I get cold that causes my to cough or us my nebulizer my Mom takes my to the emergency room to be seen. She explains my condition and the see me immediately to check to make sure my lungs are clear and my oxygen levels are ok. Since I've been here when it gets really cold or I catch a from the cold weather she keeps me home.The only medication I take is 1 baby aspirn Other than those things my health and life is going good. I home this messages helps you feel better.
I'm Jerri-Marie the 13 year old HLHS aurthor the unknown blog written above.
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