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Breaking Taboos & Leaving Room for Grief

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Manage episode 386295639 series 3051496
内容由Grey Genetics提供。所有播客内容(包括剧集、图形和播客描述)均由 Grey Genetics 或其播客平台合作伙伴直接上传和提供。如果您认为有人在未经您许可的情况下使用您的受版权保护的作品,您可以按照此处概述的流程进行操作https://zh.player.fm/legal

At 20 weeks of pregnancy, Jill learned that her son Alex had a diaphragmatic hernia. And a ventricular septal defect. An amniocentesis revealed a rare diagnosis of Mosaic Trisomy 5: some of her son’s cells had a typical number of chromosomes (46,XY) and some had an extra copy of chromosome #5. Jill shares a detailed account of her prenatal and neonatal journey, including the diagnosis of additional birth defects and complications and the lack of available information or anticipatory guidance for parents who know they will have a child in the NICU. Alex died when he was 10 months old. Jill explores the taboo around acknowledging parental exhaustion and burnout as well as the taboos surrounding talking about children who have died—which has the effect of isolating a grieving parent. She shares the importance of leaving room for grief and allowing people to talk about loved ones they have lost.

Check out other Patient Stories podcast episodes.

Read other Patient Stories on the Grey Genetics Patient Stories Page.

Interested in digging deeper into the professional issues raised in the podcast? Consider joining the Patient Stories Club!

Do you want to support Patient Stories? You can make a donation online!

Are you looking for genetic counseling? Patient Stories is sponsored by Grey Genetics, an independent telehealth genetic counseling and consulting company. Book an appointment with a genetic counselor specialized in your area of concern. All genetic counseling appointments take place over secure, HIPAA-compliant video-conferencing or by phone.

Looking for a place to collect your family history and share with relatives? Check out the FamGenix app.

Grey Genetics is no longer active on social media. To receive occasional email updates, sign up for our mailing list⁠.

--- Send in a voice message: https://podcasters.spotify.com/pod/show/patient-stories-with-grey-genetics/message
  continue reading

94集单集

Artwork
icon分享
 
Manage episode 386295639 series 3051496
内容由Grey Genetics提供。所有播客内容(包括剧集、图形和播客描述)均由 Grey Genetics 或其播客平台合作伙伴直接上传和提供。如果您认为有人在未经您许可的情况下使用您的受版权保护的作品,您可以按照此处概述的流程进行操作https://zh.player.fm/legal

At 20 weeks of pregnancy, Jill learned that her son Alex had a diaphragmatic hernia. And a ventricular septal defect. An amniocentesis revealed a rare diagnosis of Mosaic Trisomy 5: some of her son’s cells had a typical number of chromosomes (46,XY) and some had an extra copy of chromosome #5. Jill shares a detailed account of her prenatal and neonatal journey, including the diagnosis of additional birth defects and complications and the lack of available information or anticipatory guidance for parents who know they will have a child in the NICU. Alex died when he was 10 months old. Jill explores the taboo around acknowledging parental exhaustion and burnout as well as the taboos surrounding talking about children who have died—which has the effect of isolating a grieving parent. She shares the importance of leaving room for grief and allowing people to talk about loved ones they have lost.

Check out other Patient Stories podcast episodes.

Read other Patient Stories on the Grey Genetics Patient Stories Page.

Interested in digging deeper into the professional issues raised in the podcast? Consider joining the Patient Stories Club!

Do you want to support Patient Stories? You can make a donation online!

Are you looking for genetic counseling? Patient Stories is sponsored by Grey Genetics, an independent telehealth genetic counseling and consulting company. Book an appointment with a genetic counselor specialized in your area of concern. All genetic counseling appointments take place over secure, HIPAA-compliant video-conferencing or by phone.

Looking for a place to collect your family history and share with relatives? Check out the FamGenix app.

Grey Genetics is no longer active on social media. To receive occasional email updates, sign up for our mailing list⁠.

--- Send in a voice message: https://podcasters.spotify.com/pod/show/patient-stories-with-grey-genetics/message
  continue reading

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