ABOUT THE RESEARCH
Publications about infants, children and adults with trisomy 13 and 18 are important because doctors often base the care they provide on research reported in articles in medical journals and textbooks. It can be helpful for parents to review these publications as the knowledge they will obtain can help them to make the most informed decisions for their child and will enhance their ability to have productive discussions with their child’s doctors. Sometimes, doctors are unaware that surviving children can have a positive quality of life or that some might benefit from treatments and surgery. Parents can best enlighten their doctors by referring to and discussing the content of medical publications.
It might be surprising to new parents to discover that there is not a lot of research published about infants, children and adults living with trisomy 13 and 18. After the conditions were first identified in the 1960’s there was an assumption that the quality of life of survivors was poor and that early death was highly likely either from apnea or heart failure. In fact, since the syndromes were first identified, only a handful of papers have been published that relate the provision of medical care. As a consequence, doctors have little information available to them to assist them.
Trisomy 13 and 18 acquired the labels of 'lethal' and 'incompatible with life' and these were used for all fetuses and children with trisomy 13 and 18, regardless of the child’s unique anomalies. It has been formally recognized in the research that some children do survive, benefit from treatment and surgeries, and live a happy, valued life, and the use of these labels is inappropriate. In the past decade, some research has been done on the benefits of providing certain treatments to children. There has also been increased recognition that the weight of the baby can be important, (suggesting that taking baby to term if possible is important together with close monitoring for placental failure), and that cardiac surgery can be beneficial for some children. With regard to apnea, it has been discovered that some babies have obstructive apnea, for which treatment might exist.
The articles chosen by ITA are thought to be the most relevant to parents. However, a complete listing of publications can be found on www.pubmed.org. Search on trisomy 13 or 18 or related terms. The publications have been introduced with a brief summary and arranged chronologically in three sections. When it is available, there is a link to the full publication, but often the publisher of the medical journal only makes the abstract (article summary) available to the public. In this case, the link to the abstract of the article is provided.
It might be surprising to new parents to discover that there is not a lot of research published about infants, children and adults living with trisomy 13 and 18. After the conditions were first identified in the 1960’s there was an assumption that the quality of life of survivors was poor and that early death was highly likely either from apnea or heart failure. In fact, since the syndromes were first identified, only a handful of papers have been published that relate the provision of medical care. As a consequence, doctors have little information available to them to assist them.
Trisomy 13 and 18 acquired the labels of 'lethal' and 'incompatible with life' and these were used for all fetuses and children with trisomy 13 and 18, regardless of the child’s unique anomalies. It has been formally recognized in the research that some children do survive, benefit from treatment and surgeries, and live a happy, valued life, and the use of these labels is inappropriate. In the past decade, some research has been done on the benefits of providing certain treatments to children. There has also been increased recognition that the weight of the baby can be important, (suggesting that taking baby to term if possible is important together with close monitoring for placental failure), and that cardiac surgery can be beneficial for some children. With regard to apnea, it has been discovered that some babies have obstructive apnea, for which treatment might exist.
The articles chosen by ITA are thought to be the most relevant to parents. However, a complete listing of publications can be found on www.pubmed.org. Search on trisomy 13 or 18 or related terms. The publications have been introduced with a brief summary and arranged chronologically in three sections. When it is available, there is a link to the full publication, but often the publisher of the medical journal only makes the abstract (article summary) available to the public. In this case, the link to the abstract of the article is provided.
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