Heterotaxy Syndrome

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Heterotaxy Syndrome
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    Incompatible with Nature-A Mother's Story

    In the summer of 1984, I, a young black American woman married a German man and moved to his country. Several months later, an uneventful pregnancy resulted in the birth of our son. Thirteen days later, a cardiologist explained to my husband that our baby was “born incompatible with nature and would die. At any minute.”

    “There is no surgery to save him,” the doctor explained to my husband in German. “Let your son die,” he said to me in broken English.

    Our son Marc was born with a single atrium and single right ventricle, mitral atresia and pulmonary atresia; basically only half of his heart as well as with #HeterotaxySyndrome whereby the internal organs are arranged on the wrong side of the body.

    Incompatible with Nature–A Mother’s Story is about my challenge of doing all I can to ensure that he has a chance at life while battling my own fears, an array of naysaying doctors, Marc’s innumerable infections, and struggling with a foreign language.

    Despite the dire prognosis and the incredible difficulties, Marc is today thirty-three years old and thriving.

    I have written this book to inspire doctors and caregivers to be more empathetic for their charges and especially to encourage the parents of all heart warriors to be courageous and assertive in their children’s health care, and to just hang on in the fight for their child’s life. My story is a remarkable tale of rebellion and resilience; an inspirational story of my fight for my child’s life in a foreign country where I did not speak the language. It is a testimony to the perseverance of the human spirit. It will give encouragement to anyone facing a battle not of is or her own choosing.

    Thank you for your time,

    Tracie Frank Mayer

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    Hello I am Chelsee

    Hello my name is chelsee and i am from international falls Minnesota. I am married to my husband jeremy and we have 3 beautiful kids. Two years ago my daughter emmah was diagnosed with stage 4 neuroblastoma cancer at 16 months of age. She had 8 tumors all together and the main one in her stomach was the size of a mango. She had 7 rounds of chemo, a stem cell harvest and 2 stem cell transplants, 11 days of radiation, 6 months of immunotherapy and also 6 months of a medication called acutane. After 15 months of treatment we were happy to find out she was in remission as of august 2017. She has had scans and still shows that she is in remission. She isn't considered cancer free until she hits 5 years of clear scans. If she does relapse then there's no chance of a cure but sometimes there Is treatments that can prolong her life but its no guarantee. My other daughter is named corah and she is 1 years old and when i was pregnant with her she was diagnosed with congenital heart disease and heterotaxy syndrome with polysplenia. Which in other words her heart is flipped, some parts of her heart are mirror imaged, she has av canal, pulmonary atresia, Interuppted IVC, ASD, and VSD, tachycardia, inferior vena cava interruption, and dextrocardia. She had her first open heart surgery at just 11 days old where they placed a shunt so she had blood flow going to her lungs, and then she had her second open heart surgery around 11 months old and got a bigger shunt placed to help blood flow to her lungs and to help pump better through out her whole heart since her chambers in her heart aren't normal. She also had a pacemaker placed to since her heart didn't want to beet great on its own after her second surgery. Corah is mainly g tube fed but we are working on getting her to eat big people food. When corah was born we were at the tail end of emmah's treatments so we were going back and fourth on hospital floors since both girls were inpatient at one point. We were away from home a total of 1 year and 8 months which was pretty hard. Our son xander got to go to school at the Ronald McDonald House in Minneapolis so he and my husband could be close to help out. My son is such a great big brother and cares so much for his little sisters. We have now been home for 7 months and are starting to feel some what normal again. The girls have appointments but mainly corah has appointments. There is a heart valve that leaked pretty bad and they tried to repair it when she had her second surgery but now its starting to leak more so they need to see her every 3 months to keep an eye on it cause if it gets worse she can go into heart failure. We have some of the most strongest children and i am so thankful i get to be there mom. When emmah was inpatient for her stem cell transplant she got to meet lots of football players and even got to be on the love your melon clip for the today show. Our family has been through alot but my girls and son are always happy and that is what matters