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Guest Column·By Angie Childers, MD
Doctor and mom of son with Down syndrome: He is 100% worth celebrating
(ReThink Pregnancy) Exactly six months before my third child was born, I found out he was a boy with Down syndrome.
I’m a family physician who completed a women’s health fellowship and spent nearly 20 years caring for pregnant mothers and delivering often difficult diagnoses. I’ve been on both sides of this news, and over the years, I’ve advocated for people with Down syndrome and learned how to best walk families through the challenges, but also the joys, of Down syndrome, and I want to do the same for you.
I remember how it felt finding out during pregnancy. It gave me time to process the news, mourn the child I had imagined, and celebrate the child I was given. As a physician, I also knew about the significant medical challenges that could lie ahead.
Sadly, many physicians offer termination as the solution, often in the same conversation that the diagnosis is delivered. Like many parents, I remember being overwhelmed and surprised by the news. What I needed, and what many parents need today, is an honest conversation about the diagnosis while also receiving medical and community resources and support - not despair, abortion, or even sugarcoating.
The pregnancy was a roller coaster of unknowns and medical scares, but the birth was joyous. His diagnosis didn’t change our love for him, and the journey to getting him earthside was that much sweeter.
If I were your physician, here’s how I’d walk you through this season.
First off, here’s what you shouldn’t hear:
“I’m sorry.”
When a physician delivers the news of a Down syndrome diagnosis, it is easy to focus on the possible medical complications and treat Down syndrome as catastrophic news. The diagnosis may be unexpected, but your child is not a tragedy.
As you attempt to wrap your mind around the extra challenges that may be associated with a Down syndrome diagnosis, you don’t need your first interaction with someone regarding the news to be despair. You need love, support, celebration, and congratulations. If I were in the room with you, I’d say, “I understand this is unexpected news,” instead of expressing sorrow.
You need support from a good medical team, but it doesn’t end there. Yes, Down syndrome can be associated with additional medical and developmental needs, but that’s only half the picture.
You should surround yourself with family and friends who will walk beside you in this journey, but I would also connect you with an expectant family and another family who has a child with Down syndrome. This will give you a realistic understanding of what life is actually like raising a child with Down syndrome.
It’s easy to go on a Google-ing spree and rely solely on information from physicians or online sources, both of which may be outdated or incomplete. However, connecting with these families, having one-on-one conversations, and discussing their first-hand experience and advice fills a gap in understanding that healthcare teams and parents may not see, which is the beauty in the diagnosis and the fierce, indescribable, and unique love that a child with Down syndrome brings.
I have this in my son, and I’ve found many other parents feel the same.
And it’s not just my experience. It’s what literature actually demonstrates.
Research shows that parents raising a child with Down syndrome often experience joy and satisfaction. Nearly four in five parents of children with Down syndrome report a more positive outlook on life as a result, according to a study published in the American Journal of Medical Genetics.^1
Parents are often concerned about how the diagnosis will affect their other children. In a study examining the perspectives of 822 siblings of people with Down syndrome, 96% reported affection toward their sibling with Down syndrome, and 94% said they were proud of their brother or sister with Down syndrome. Additionally, 88% of older siblings felt they were better people because of their sibling with Down syndrome.^2
In a U.S. study published in the American Journal of Medical Genetics, researchers surveyed 284 people with Down syndrome ages 12 and older. Ninety-nine percent said they were happy with their lives, 97% liked who they were, and 96% liked how they looked.^3
Down syndrome isn’t a death sentence. In fact, now is the best time for your child to be born with Down syndrome. With advances in medicine and early intervention, people born today with Down syndrome are thriving. For example, the average life expectancy of an individual with Down syndrome is now approximately 65 years, compared with just 10 years in the 1960s and 25 years in 1980.
Research shows that early intervention is associated with reaching developmental milestones earlier, improved learning ability, and a better quality of life.
There is a more balanced approach to delivering a Down syndrome diagnosis, one that honestly communicates potential medical concerns while also recognizing the joy, value, and dignity of every child.
As a physician and mother, I want parents to know they don't have to walk this path alone, and that there’s a better way to do it: with support from family and friends, families experiencing Down syndrome, and a medical team that respects you and your child's life.
Down syndrome has challenges, but take it from me: it's 100% worth celebrating.
References
Skotko BG, Levine SP, Goldstein R. (2011). Having a son or daughter with Down syndrome: Perspectives from mothers and fathers. American Journal of Medical Genetics Part A, 155, 2335-2347.
Skotko BG, Levine SP, Goldstein R. (2011). Having a brother or sister with Down syndrome: Perspectives from siblings. American Journal of Medical Genetics Part A, 155, 2348-2359.
Skotko BG, Levine SP, Goldstein R. (2011). Self-perceptions from people with Down syndrome. American Journal of Medical Genetics Part A, 155, 2360-2369.
Author Bio: Angie Childers, MD, is a family medicine physician in Memphis, Tennessee. She and her husband have three children. Their youngest son has Down syndrome and he has inspired her interest in caring for individuals with Down syndrome.
Editor's Note: This article was originally published at ReThink Pregnancy, a collaboration between EveryLife and AAPLOG, the American Association of Pro-Life OBGYNs.
Live Action News is pro-life news and commentary from a pro-life perspective.
Our work is possible because of our donors. Please consider giving to further our work of changing hearts and minds on issues of life and human dignity.
Contact editor@liveaction.org for questions, corrections, or if you are seeking permission to reprint any Live Action News content.
Guest Articles: To submit a guest article to Live Action News, email editor@liveaction.org with an attached Word document of 800-1000 words. Please also attach any photos relevant to your submission if applicable. If your submission is accepted for publication, you will be notified within three weeks. Guest articles are not compensated (see our Open License Agreement). Thank you for your interest in Live Action News!
Angeline Tan
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Austen Haynes
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·Guest Column·By Angie Childers, MD
Doctor and mom of son with Down syndrome: He is 100% worth celebrating
(ReThink Pregnancy) Exactly six months before my third child was born, I found out he was a boy with Down syndrome.
I’m a family physician who completed a women’s health fellowship and spent nearly 20 years caring for pregnant mothers and delivering often difficult diagnoses. I’ve been on both sides of this news, and over the years, I’ve advocated for people with Down syndrome and learned how to best walk families through the challenges, but also the joys, of Down syndrome, and I want to do the same for you.
I remember how it felt finding out during pregnancy. It gave me time to process the news, mourn the child I had imagined, and celebrate the child I was given. As a physician, I also knew about the significant medical challenges that could lie ahead.
Sadly, many physicians offer termination as the solution, often in the same conversation that the diagnosis is delivered. Like many parents, I remember being overwhelmed and surprised by the news. What I needed, and what many parents need today, is an honest conversation about the diagnosis while also receiving medical and community resources and support - not despair, abortion, or even sugarcoating.
The pregnancy was a roller coaster of unknowns and medical scares, but the birth was joyous. His diagnosis didn’t change our love for him, and the journey to getting him earthside was that much sweeter.
If I were your physician, here’s how I’d walk you through this season.
First off, here’s what you shouldn’t hear:
“I’m sorry.”
When a physician delivers the news of a Down syndrome diagnosis, it is easy to focus on the possible medical complications and treat Down syndrome as catastrophic news. The diagnosis may be unexpected, but your child is not a tragedy.
As you attempt to wrap your mind around the extra challenges that may be associated with a Down syndrome diagnosis, you don’t need your first interaction with someone regarding the news to be despair. You need love, support, celebration, and congratulations. If I were in the room with you, I’d say, “I understand this is unexpected news,” instead of expressing sorrow.
You need support from a good medical team, but it doesn’t end there. Yes, Down syndrome can be associated with additional medical and developmental needs, but that’s only half the picture.
You should surround yourself with family and friends who will walk beside you in this journey, but I would also connect you with an expectant family and another family who has a child with Down syndrome. This will give you a realistic understanding of what life is actually like raising a child with Down syndrome.
It’s easy to go on a Google-ing spree and rely solely on information from physicians or online sources, both of which may be outdated or incomplete. However, connecting with these families, having one-on-one conversations, and discussing their first-hand experience and advice fills a gap in understanding that healthcare teams and parents may not see, which is the beauty in the diagnosis and the fierce, indescribable, and unique love that a child with Down syndrome brings.
I have this in my son, and I’ve found many other parents feel the same.
And it’s not just my experience. It’s what literature actually demonstrates.
Research shows that parents raising a child with Down syndrome often experience joy and satisfaction. Nearly four in five parents of children with Down syndrome report a more positive outlook on life as a result, according to a study published in the American Journal of Medical Genetics.^1
Parents are often concerned about how the diagnosis will affect their other children. In a study examining the perspectives of 822 siblings of people with Down syndrome, 96% reported affection toward their sibling with Down syndrome, and 94% said they were proud of their brother or sister with Down syndrome. Additionally, 88% of older siblings felt they were better people because of their sibling with Down syndrome.^2
In a U.S. study published in the American Journal of Medical Genetics, researchers surveyed 284 people with Down syndrome ages 12 and older. Ninety-nine percent said they were happy with their lives, 97% liked who they were, and 96% liked how they looked.^3
Down syndrome isn’t a death sentence. In fact, now is the best time for your child to be born with Down syndrome. With advances in medicine and early intervention, people born today with Down syndrome are thriving. For example, the average life expectancy of an individual with Down syndrome is now approximately 65 years, compared with just 10 years in the 1960s and 25 years in 1980.
Research shows that early intervention is associated with reaching developmental milestones earlier, improved learning ability, and a better quality of life.
There is a more balanced approach to delivering a Down syndrome diagnosis, one that honestly communicates potential medical concerns while also recognizing the joy, value, and dignity of every child.
As a physician and mother, I want parents to know they don't have to walk this path alone, and that there’s a better way to do it: with support from family and friends, families experiencing Down syndrome, and a medical team that respects you and your child's life.
Down syndrome has challenges, but take it from me: it's 100% worth celebrating.
References
Skotko BG, Levine SP, Goldstein R. (2011). Having a son or daughter with Down syndrome: Perspectives from mothers and fathers. American Journal of Medical Genetics Part A, 155, 2335-2347.
Skotko BG, Levine SP, Goldstein R. (2011). Having a brother or sister with Down syndrome: Perspectives from siblings. American Journal of Medical Genetics Part A, 155, 2348-2359.
Skotko BG, Levine SP, Goldstein R. (2011). Self-perceptions from people with Down syndrome. American Journal of Medical Genetics Part A, 155, 2360-2369.
Author Bio: Angie Childers, MD, is a family medicine physician in Memphis, Tennessee. She and her husband have three children. Their youngest son has Down syndrome and he has inspired her interest in caring for individuals with Down syndrome.
Editor's Note: This article was originally published at ReThink Pregnancy, a collaboration between EveryLife and AAPLOG, the American Association of Pro-Life OBGYNs.
Live Action News is pro-life news and commentary from a pro-life perspective.
Our work is possible because of our donors. Please consider giving to further our work of changing hearts and minds on issues of life and human dignity.
Contact editor@liveaction.org for questions, corrections, or if you are seeking permission to reprint any Live Action News content.
Guest Articles: To submit a guest article to Live Action News, email editor@liveaction.org with an attached Word document of 800-1000 words. Please also attach any photos relevant to your submission if applicable. If your submission is accepted for publication, you will be notified within three weeks. Guest articles are not compensated (see our Open License Agreement). Thank you for your interest in Live Action News!
Angeline Tan
·Guest Column
Austen Haynes
·International
Rebecca Oas, Ph.D.
·Guest Column
Lisa Bourne
·Guest Column
Mark Lee Dickson
·Guest Column
Valerie Abraham
·