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Regrets Over a Missed Opportunity to Have a Biological Child - One Couple's Journey After Lung Transplantation for Cystic Fibrosis
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A6574 - Regrets Over a Missed Opportunity to Have a Biological Child - One Couple's Journey After Lung Transplantation for Cystic Fibrosis
Author Block: S. Ladores, L. A. Bray, J. Brown; School of Nursing, University of Alabama at Birmingham, Birmingham, AL, United States.
Introduction: Cystic fibrosis (CF) is a genetic, chronic disease that affects the CF transmembrane conductance regulator protein, causing abnormal ion transport across cell membranes. Abnormal ion transport results in thickened secretions in the respiratory, gastrointestinal, and reproductive tracts. Over 95% of males with CF have congenital bilateral absence of the vas deferens causing infertility. This is a case study of a young man with CF and his wife who shared their journey to parenthood.
Description of the actual case report: A 29-year-old male, with heterozygous DF508 mutation, underwent a bilateral lung transplant in March of 2013 after eight months of oxygen dependency secondary to FEV1=12% predicted. Approximately a year post-transplant, he and his wife decided that they wanted to start a family and consulted a fertility specialist who advised them to utilize donor sperm due to the teratogenic effects of post-transplant medications. Taken by surprise with this news, he stated: “[Having to use donor sperm] was bigger than them [fertility specialists] saying, ‘You can’t have kids.’” They expressed regret about the missed opportunity for pre-transplant sperm aspiration and cryopreservation in order to conceive a biological child because of the lack of education provided by their CF care team. Although they understood the prioritization of care by his CF care team to save his life, they mourned the loss of their reproductive capability. He and his wife now want to be advocates for others who are contemplating transplantation and are in their childbearing years. He said: “Because if we would’ve known [about the effects of transplant medications], we would’ve made sure I [banked] my own [sperm].”
Novelty and importance of the specific case: This case demonstrates how oversight in providing education regarding the fertility implications of lung transplantation greatly changed the course of one couple’s path to parenthood and affected their emotional well-being. This case highlights the need for further research and education in CF reproductive health issues. Their powerful narratives show that the perspectives and experiences of adults with CF wishing to reproduce must be elicited to inform the development of clinically relevant interventions that meet their unique needs. With the average life expectancy of individuals with CF continuing to rise, their desire to experience all developmental milestones, including parenthood, must be considered. This case study suggests a critical gap in comprehensive care. The fertility preservation model used in oncology may serve as a template for adoption in CF.
Author Block: S. Ladores, L. A. Bray, J. Brown; School of Nursing, University of Alabama at Birmingham, Birmingham, AL, United States.
Introduction: Cystic fibrosis (CF) is a genetic, chronic disease that affects the CF transmembrane conductance regulator protein, causing abnormal ion transport across cell membranes. Abnormal ion transport results in thickened secretions in the respiratory, gastrointestinal, and reproductive tracts. Over 95% of males with CF have congenital bilateral absence of the vas deferens causing infertility. This is a case study of a young man with CF and his wife who shared their journey to parenthood.
Description of the actual case report: A 29-year-old male, with heterozygous DF508 mutation, underwent a bilateral lung transplant in March of 2013 after eight months of oxygen dependency secondary to FEV1=12% predicted. Approximately a year post-transplant, he and his wife decided that they wanted to start a family and consulted a fertility specialist who advised them to utilize donor sperm due to the teratogenic effects of post-transplant medications. Taken by surprise with this news, he stated: “[Having to use donor sperm] was bigger than them [fertility specialists] saying, ‘You can’t have kids.’” They expressed regret about the missed opportunity for pre-transplant sperm aspiration and cryopreservation in order to conceive a biological child because of the lack of education provided by their CF care team. Although they understood the prioritization of care by his CF care team to save his life, they mourned the loss of their reproductive capability. He and his wife now want to be advocates for others who are contemplating transplantation and are in their childbearing years. He said: “Because if we would’ve known [about the effects of transplant medications], we would’ve made sure I [banked] my own [sperm].”
Novelty and importance of the specific case: This case demonstrates how oversight in providing education regarding the fertility implications of lung transplantation greatly changed the course of one couple’s path to parenthood and affected their emotional well-being. This case highlights the need for further research and education in CF reproductive health issues. Their powerful narratives show that the perspectives and experiences of adults with CF wishing to reproduce must be elicited to inform the development of clinically relevant interventions that meet their unique needs. With the average life expectancy of individuals with CF continuing to rise, their desire to experience all developmental milestones, including parenthood, must be considered. This case study suggests a critical gap in comprehensive care. The fertility preservation model used in oncology may serve as a template for adoption in CF.
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