Good Morning Everyone!
My name is Carmen Waga, and my son Brandon, who is 17 years old, was born with Hypoplastic Left Heart Syndrome. When he was five days old, he when into cardiac arrest. Later that day, we find out that he was born with HLHS. It was very devastated for the whole family because we were told he was born fine. The Army hospital that he was born on did not detected his condition. He was flown to the nearest Children hospital in the area. At the hospital we were given three choices: compassionate care, heart transplant, or three radical heart surgeries. We automatically, disregard the first choice. As far as the second option the hospital did not had a heart available for him. Having no knowledge of what HLHS was about (we were given 24 hours to decide the choice) my husband and I decided to go to the Hospital library and try to fine information as much as we could to read from. At day 7th, Brandon had the Norwood procedure, which late cause to major complication due to fluid being retained in the chest area. We did not see him open his beautiful green eyes, three months later, hoping and praying every single day and night for his prompt recovery. When he finally, was removed from all lines, close the chest cavity, removed the ventilator, feeding tubes, etc.(he had all these equipment for three months and 1/2) he had forgotten who to suck a bottle, and didn't know how to even cry. At five month all he had the Bi-Glenn Procedure, at 4 he had the Maze Procedure (tightening of the Triscupid valve due to a severe regardigation) at five years of age, he finally, got the Fontan and Pacemaker Placement due to the development of arrhythmia.
Growing up has been like a roller-coaster with ups and downs, but yet rewarding years for us, Brandon have so much resilience at a such young age. He has teach us how to really been strong not only as individuals, but as a family. We love him to so much! He has also developed thrombosis of the Neo-aorta, Protein Loosing Enteropathy, Esonophilia gastritis. He graduated in June, 2018 working on a dual program: High School + College Credits. He is now a freshman in College, he would like to be an Astronomy. Please feel free to write me at any time.
Waga Family
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Carmen C. Waga
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Original Message:
Sent: 08-28-2017 09:37
From: Andrea Baer
Subject: Introduce yourself
Hi Ashley.
Welcome to the community. My name is Andrea and I am the community manager here, but also a heart mom. My son is 8 now and was born with a complete AV Canal defect and a few other defects. We are currently watching his aortic valve for stenosis.
I feel you in the worry department. It seems like some days are good for me and I barely think about it. Other days I'm a mess. I think it's a normal part of being a heart mom. We want the best for our kids and we worry. I don't have any magic words to stop that but just wanted to let you know you aren't alone.
PS: Caleb is adorable!
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Andrea Baer
Director of Patient Advocacy
Mended Hearts/Mended Little Hearts
Grapeville PA
7243967820
Director of Patient Advocacy
Original Message:
Sent: 08-26-2017 05:02
From: Caleb Nelson
Subject: Introduce yourself
Hi Everyone,
My name is actually Ashley Nelson, when I set up our account initially I thought I was filling out a questionnaire for our son, so my name shows as Caleb. My son Caleb is now just over 2 years old. Caleb was born undiagnosed, his special little heart was found to have a CHD and VSD within the first week of life and he was in heart failure by the second. It turned out his VSD was much larger than thought so he ended up at the Seattle Children's Hospital where he underwent surgery. There I was told he also had a right aortic arch with mirror image and a left superior vena cava. Caleb's only weighed 6 lbs the day of his surgery and it was a huge success. His heart was the size of a ping pong ball and his larger hole, his VSD was the size of a nickel. Caleb has been living his life as a "normal" baby/toddler for about a year now. He had a genetics consultation and now needs to be tested for syndromes and then he had his heart checkup two weeks ago and I was told his Aortic Root is dialated, and now I'm back in panicked Heart Mom mode, I'm afraid to let him cry, or let him play outside in the unclean air (forest fire season in Montana). I hope by joining in here I can let some of my worry go and be able to find others parents who can relate. I don't have any connection to fellow Moms in my area and I'm not great at reaching out.
Thanks!
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Ashley Nelson
Mommy of four 5 and under
Lolo, Montana
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