Down Syndrome Awareness Month - Day 15
How many babies with Down syndrome are aborted before they're born?
For years, we have heard that an estimated 90-95% of babies diagnosed with Down syndrome in-utero are aborted. Those numbers surfaced in 1999 in Europe, where countries track prenatal diagnoses of birth defects and subsequent abortion. The US doesn't collect that information, and estimates here have been all over the map.
The Jerome Lejeune Foundation released a new study that gives us more solid data. Researchers used information and data from a dozen states that do track live births of babies with Down syndrome to devise a new estimate of how many babies with Down syndrome were likely aborted. Their model showed that such abortions have reduced the US population of people with Down syndrome by about 30 percent.
That doesn't mean 30 percent of babies with positive tests for Down syndrome were aborted. The number reflects a reduction in the population we'd expect to be living with Down syndrome, regardless of when it was diagnosed. The key is a related study in 2012, which used a mathematical model to estimate that 67% of babies diagnosed with Down syndrome in the US are aborted.
While 67% is certainly better than the 90-95% we're seeing in Europe, it's still too many.
More information can be found in the Jerome Lejeune Foundation's Summer 2015 Newsletter.
Saturday, October 15, 2016
Day 14: What should medical professionals say?
Down Syndrome Awareness Month - Day 14
What advice should I give as a medical professional?
Parents who receive the news that their baby has Down syndrome often remember all of the details surrounding it, where they were, what time of day it was, etc.
Conversations should start with positive words, avoiding language that conveys pity or sorrow, and not involve unsolicited personal opinions. Accurate, up-to-date information should be communicated, and information offered for local support groups and community resources.
While you may be required to tell a parent all of their options, please do not continuously repeat that the mother has the option of aborting her baby.... presenting her with her options is one thing, talking about it more than that is borderline harassment. Don't tell them that their child will "suffer" from a "low quality of life".
Use facts and logic when you talk to them. Mention what I've said the previous 13 days. Yes, there are health complications commonly associated with Down syndrome. However, that certainly isn't the only thing about Down syndrome. Mention that with medical technology available today, the life expectancy for children with Down syndrome has increased from 10 years to 60 years. Children with Down syndrome are graduating high school, holding jobs, and can even live on their own. It's not all roses but it isn't professional to only point out the negatives associated with the diagnosis.
Again, I point out that a link to local support groups can be found in the day 8 post.
What advice should I give as a medical professional?
Parents who receive the news that their baby has Down syndrome often remember all of the details surrounding it, where they were, what time of day it was, etc.
Conversations should start with positive words, avoiding language that conveys pity or sorrow, and not involve unsolicited personal opinions. Accurate, up-to-date information should be communicated, and information offered for local support groups and community resources.
While you may be required to tell a parent all of their options, please do not continuously repeat that the mother has the option of aborting her baby.... presenting her with her options is one thing, talking about it more than that is borderline harassment. Don't tell them that their child will "suffer" from a "low quality of life".
Use facts and logic when you talk to them. Mention what I've said the previous 13 days. Yes, there are health complications commonly associated with Down syndrome. However, that certainly isn't the only thing about Down syndrome. Mention that with medical technology available today, the life expectancy for children with Down syndrome has increased from 10 years to 60 years. Children with Down syndrome are graduating high school, holding jobs, and can even live on their own. It's not all roses but it isn't professional to only point out the negatives associated with the diagnosis.
Again, I point out that a link to local support groups can be found in the day 8 post.
 |
| Octavia says that we're more alike than different! |
Thursday, October 13, 2016
Day 13: What do I say?
Down Syndrome Awareness Month - Day 13
What do I say to someone who will be giving birth to a baby with Down syndrome?
What would you say to a mother who is pregnant? You'd say, "Congratulations!" Right? This is the same thing you say to someone who is expecting a baby with Down syndrome.
If you want to go into further detail, tell them how Down syndrome is not a death sentence and their child will teach them the true meaning of life, love, and happiness. That child will bring them immense joy.
Tell them to not be afraid. While it can be scary to receive a diagnosis that makes your child "different", it'll all be okay and there are support networks for families raising children with Down syndrome (more on support networks can be found in the day 8 post).
What do I say to someone whose baby was diagnosed with Down syndrome?
Again, you congratulate them.
You can ask:
- How's the baby's health? Down syndrome does come with health issues but Down syndrome itself is not a health issue.
- How are you? Not everyone wants to talk about their feelings but putting the question out there is appreciated (especially if it's sincere).
- The baby has your [insert feature here]. People with Down syndrome look more like their family than they do each other.
- Can I hold him? Pay attention to him, hold him, love on him. Treat him like you would any other baby.
What should I never, ever say?
Statements that convey or infer pity:
"I'm sorry."
"What a shame."
"How sad."
"Poor thing."
"It could be worse."
Questions such as:
"How severely is he affected?"
"Didn't you have the tests?"
Statements that imply that people with disabilities are a huge burden:
"I couldn't do it."
"I couldn't handle it."
"You're such a saint."
Stereotypical statements that are not helpful and untrue:
"They're such happy and loving children."
What do I say to someone who will be giving birth to a baby with Down syndrome?
What would you say to a mother who is pregnant? You'd say, "Congratulations!" Right? This is the same thing you say to someone who is expecting a baby with Down syndrome.
If you want to go into further detail, tell them how Down syndrome is not a death sentence and their child will teach them the true meaning of life, love, and happiness. That child will bring them immense joy.
Tell them to not be afraid. While it can be scary to receive a diagnosis that makes your child "different", it'll all be okay and there are support networks for families raising children with Down syndrome (more on support networks can be found in the day 8 post).
What do I say to someone whose baby was diagnosed with Down syndrome?
Again, you congratulate them.
You can ask:
- How's the baby's health? Down syndrome does come with health issues but Down syndrome itself is not a health issue.
- How are you? Not everyone wants to talk about their feelings but putting the question out there is appreciated (especially if it's sincere).
- The baby has your [insert feature here]. People with Down syndrome look more like their family than they do each other.
- Can I hold him? Pay attention to him, hold him, love on him. Treat him like you would any other baby.
What should I never, ever say?
Statements that convey or infer pity:
"I'm sorry."
"What a shame."
"How sad."
"Poor thing."
"It could be worse."
Questions such as:
"How severely is he affected?"
"Didn't you have the tests?"
Statements that imply that people with disabilities are a huge burden:
"I couldn't do it."
"I couldn't handle it."
"You're such a saint."
Stereotypical statements that are not helpful and untrue:
"They're such happy and loving children."
Wednesday, October 12, 2016
Day 12: Older Parents and Other Factors
Down Syndrome Awareness Month - Day 12
Aren't most children born with Down syndrome born to older parents?
This is false. Most children with Down syndrome are born to women younger than 35 years old simply because younger women have more children. However, the chances of having a child with Down syndrome increases with the age of the mother, especially after age 35.
A woman's chances of giving birth to a child with Down syndrome increase with age because older eggs have a greater risk of improper chromosome division.
The chances of conceiving a child with Down syndrome:
What are other factors?
- A woman who has one child with Down syndrome has about a 1 in 100 chance of having another child with Down syndrome.
- Both men and women can pass the genetic translocation for Down syndrome on to their children.
Aren't most children born with Down syndrome born to older parents?
This is false. Most children with Down syndrome are born to women younger than 35 years old simply because younger women have more children. However, the chances of having a child with Down syndrome increases with the age of the mother, especially after age 35.
A woman's chances of giving birth to a child with Down syndrome increase with age because older eggs have a greater risk of improper chromosome division.
The chances of conceiving a child with Down syndrome:
- Under age 25 - 1 in 1,400
- By age 35 - 1 in 350
- By age 40 - 1 in 100
- By age 45 - 1 in 30
As the average age of women becoming pregnant increases, Down syndrome is being diagnosed more frequently.
What are other factors?
- A woman who has one child with Down syndrome has about a 1 in 100 chance of having another child with Down syndrome.
- Both men and women can pass the genetic translocation for Down syndrome on to their children.
Day 11: Who Discovered Down Syndrome?
Down Syndrome Awareness Month - Day 11
Who discovered Down syndrome?
In 1866, British physician John Langdon Down first described Down syndrome as "Mongolism". Down published an essay in which he described a set of children with common features who were distinct from other children with mental disabilities. At the time, he was superintendent of an asylum for children with mental disabilities in Surrey, England. Down based his term, Mongolism, on the notion that these children looked like people from Mongolia, who were thought then to have an arrested development.
In the 1960's, this ethnic insult came under fire by Asian genetic researched and the term was dropped from scientific use. In the early 1970's that the term Down syndrome became accepted.
Petrus Johannes Waardenburg, a Dutch ophthalmologist and geneticist, and Dr. Adrien Bleyer were the first people known to have speculated that Down syndrome might be due to chromosomal abnormalities.
In 1959, Jerome Lejeune, a French pediatrician and geneticist, and Patricia Jacobs, a British geneticist, independently determined the cause of Down syndrome to be trisomy of the 21st chromosome. Cases of Down syndrome due to translocation and mosaicism were described over the next three years.
Who discovered Down syndrome?
In 1866, British physician John Langdon Down first described Down syndrome as "Mongolism". Down published an essay in which he described a set of children with common features who were distinct from other children with mental disabilities. At the time, he was superintendent of an asylum for children with mental disabilities in Surrey, England. Down based his term, Mongolism, on the notion that these children looked like people from Mongolia, who were thought then to have an arrested development.
In the 1960's, this ethnic insult came under fire by Asian genetic researched and the term was dropped from scientific use. In the early 1970's that the term Down syndrome became accepted.
Petrus Johannes Waardenburg, a Dutch ophthalmologist and geneticist, and Dr. Adrien Bleyer were the first people known to have speculated that Down syndrome might be due to chromosomal abnormalities.
In 1959, Jerome Lejeune, a French pediatrician and geneticist, and Patricia Jacobs, a British geneticist, independently determined the cause of Down syndrome to be trisomy of the 21st chromosome. Cases of Down syndrome due to translocation and mosaicism were described over the next three years.
Monday, October 10, 2016
Day 10: Health Issues Associated with Down Syndrome
Down Syndrome Awareness Month - Day 10
What health issues are commonly associated with Down syndrome?
Here are ten health issues associated with Down syndrome:
What health issues are commonly associated with Down syndrome?
Here are ten health issues associated with Down syndrome:
- Heart defects - As mentioned in a previous post, about half of the children with Down syndrome are born with some type of heart defect.
- Leukemia - Children with Down syndrome are many times more likely to develop either acute lymphocytic leukemia (ALL) or acute myeloid leukemia (AML) than other children are, with an overall risk of about 2-3%.
- Infectious diseases - Since there are abnormalities in the immune systems of people with Down syndrome, they're more at risk of infectious diseases, such as pneumonia.
- Dementia - People with Down syndrome have an increased risk of dementia - signs and symptoms may begin around age 50. Those who have dementia also have a higher rate of seizures. A person with Down syndrome also has an increased risk of developing Alzheimer's disease.
- Sleep apnea - Because of soft tissue and skeletal changes that lead to the obstruction of their airways, children and adults with Down syndrome are at a greater risk of obstructive sleep apnea.
- Obesity - Research suggests that both the thyroid and a lower metabolic rate contribute to people with Down syndrome being overweight. This means that they burn fewer calories overall and need to exercise more to burn off the same number of calories.
- Vision problem - More than 60% of children with Down syndrome have vision problems, including cataracts. The risk of cataract increases with age. Other eye problems include nearnearsightedness, "crossed" eyes (strabismus), and rapid, involuntary eye movements.
- Hearing loss - About 70-75% of children with Down syndrome have some hearing loss.
- Hypothyroidism - The thyroid is a gland that makes hormones the body uses to regulate things such as temperature and energy. Hypothyroidism is when the thyroid produces little to no thyroid hormone.
- Hypotonia - Poor muscle tone and low strength contribute to the delays our children have in rolling over, sitting up, crawling, and walking. Despite these delays, children with Down syndrome can learn to participate in physical activities like other children.
 |
| Octavia and our dog, Zenobia |
Sunday, October 9, 2016
Day 9: Successful People with Down Syndrome
Day 9 - Successful People with Down syndrome
This list does not include all of the successful people with Down syndrome but does highlight several different categories people with Down syndrome have been successful in. These men and women show that, with enough hard work and determination, anything is possible.
Angela Bachiller - In 2013 in Valladolid, Spain, Angela became the first person with Down syndrome ever to be elected councilwoman.
Katie Meade - Katie is the spokesmodel for the new haircare line Beauty & Pin-Ups. According to People magazine, Katie is the first woman with Down syndrome to be features as the face of a beauty campaign.
Melissa Reilly - Melissa is a motivational speaker, travels to represent the Down syndrome community internationally, and is a Special Olympian who brings home gold medals in skiing, cycling, and swimming. She also interns for a Massachusetts state senator and tutors preschool students with Down syndrome in math and reading.
This list does not include all of the successful people with Down syndrome but does highlight several different categories people with Down syndrome have been successful in. These men and women show that, with enough hard work and determination, anything is possible.
Angela Bachiller - In 2013 in Valladolid, Spain, Angela became the first person with Down syndrome ever to be elected councilwoman.
Bernadette Resha - Bernadette is a painter, public speaker, and violinist. Her works of art have been features on television shows, in music videos, commercials, and magazines.
Chris Burke - Chris is an actor and folk singer best known for his role as Corky in Life Goes On
Christian Royal - Christian is a highly talented pottery maker. He sells beautiful dishes and bowls online and at an art gallery in South Carolina.
Eli Reimer - Eli became the first person with Down syndrome to reach the base camp of Mount Everest.
Gigi Cunningham - Gigi is another model with Down syndrome. Gigi is using her talent to raise awareness for the Down syndrome community and to put an end to bullying.
Gigi Cunningham - Gigi is another model with Down syndrome. Gigi is using her talent to raise awareness for the Down syndrome community and to put an end to bullying.
Jamie Brewer - Jamie is an actress who appeared on American Horror Story: Murder House and American Horror Story: Coven.
Karen Gaffney - Karen is a disability rights campaigner and the first living person with Down syndrome to receive an honorary doctorate degree.Katie Meade - Katie is the spokesmodel for the new haircare line Beauty & Pin-Ups. According to People magazine, Katie is the first woman with Down syndrome to be features as the face of a beauty campaign.
Luke Zimmerman - Luke is best known for starring in The Secret Life of the American Teenager.
Madeline Stuart - Madeline is a model from Australia who travels around the world modeling and has even participated in New York Fashion Week.Melissa Reilly - Melissa is a motivational speaker, travels to represent the Down syndrome community internationally, and is a Special Olympian who brings home gold medals in skiing, cycling, and swimming. She also interns for a Massachusetts state senator and tutors preschool students with Down syndrome in math and reading.
Megan McCormick - Megan is the first person with Down syndrome to graduate with honors from a technical college in the United States. Megan earned her degree in education and was at the top of her class.
Sujeet Desai - Sujeet is a musician and plays seven instruments. He graduated from high school with a 4.3 grade point average and went on to graduate from the Berkshire Hills Music Academy. Sujeet has received numerous awards and was even featured in the Wall Street Journal and Time Magazine as well as on 20/20 and the Oprah Winfrey Show.
Tim Harris - Tim is the owner of the now-closed Tim's Place, a popular restaurant in Albuquerque, NM.
Saturday, October 8, 2016
Day 8: Support Networks
Day 8 - Support Networks
MYTH: Parents will not find community support in bringing up their child with Down syndrome.
TRUTH: Almost every community in the United States has parents support groups and other community organizations directly involved in providing services to families of individuals with Down syndrome. These organizations provide programs such as: new parent support and education, family meetings, sibling and grandparent support, recreational activities, lending libraries, helplines, regional conferences, partnerships with Down syndrome clinics, training for medical professionals and educators, advocacy, and buddy walks. To find a support group in your area, visit this ndss.org page.
Today was our local organization's Step Up for Down Syndrome walk. All together, over $130,000 was raised! In addition for raising funds for our location organization, which does so much for the families with children with Down syndrome, this event is a great way to network with other families who are raising a child with Down syndrome.
I got to meet another family who adopted from Armenia! Their son came home a few months after Octavia came home and was in the same orphanage (small world). It's so wonderful to meet other families who are raising a loved one with Down syndrome, especially ones who have been adopted. Adopted children come with their own special needs in addition to their medical diagnoses. Raising a child with Down syndrome is different for all families but for many who have adopted a child with Down syndrome out of choice, the path tends to feel different from the path of those families whose biological child has Down syndrome.
MYTH: Parents will not find community support in bringing up their child with Down syndrome.
TRUTH: Almost every community in the United States has parents support groups and other community organizations directly involved in providing services to families of individuals with Down syndrome. These organizations provide programs such as: new parent support and education, family meetings, sibling and grandparent support, recreational activities, lending libraries, helplines, regional conferences, partnerships with Down syndrome clinics, training for medical professionals and educators, advocacy, and buddy walks. To find a support group in your area, visit this ndss.org page.
Today was our local organization's Step Up for Down Syndrome walk. All together, over $130,000 was raised! In addition for raising funds for our location organization, which does so much for the families with children with Down syndrome, this event is a great way to network with other families who are raising a child with Down syndrome.
I got to meet another family who adopted from Armenia! Their son came home a few months after Octavia came home and was in the same orphanage (small world). It's so wonderful to meet other families who are raising a loved one with Down syndrome, especially ones who have been adopted. Adopted children come with their own special needs in addition to their medical diagnoses. Raising a child with Down syndrome is different for all families but for many who have adopted a child with Down syndrome out of choice, the path tends to feel different from the path of those families whose biological child has Down syndrome.
 |
| Octavia and Sam meet. |
 |
| Hugs! |
Friday, October 7, 2016
Day 7: People First Language
Day 7 - People First Language
"That Down syndrome boy."
"That girl has Down syndrome."
Which one is correct? The second one, "That girl has Down syndrome." Always put the person before the syndrome. People "have" Down syndrome, they do not "suffer from" it. Those with disabilities are not defined by their disabilities, which is why their disability should not come first.
Also, the term "intellectual disability" has replaced "mental retardation" as the appropriate term. Many advocates for those with special needs condemn the use of the word "retard" or "retarded" in any derogatory context. Using either of this words, in any context, is hurtful and suggests that people with disabilities are not competent.
"That Down syndrome boy."
"That girl has Down syndrome."
Which one is correct? The second one, "That girl has Down syndrome." Always put the person before the syndrome. People "have" Down syndrome, they do not "suffer from" it. Those with disabilities are not defined by their disabilities, which is why their disability should not come first.
This is Octavia. Octavia is smart, funny, loving, sweet, and kind. Octavia has Down syndrome. Octavia is not Down syndrome.
Also, the term "intellectual disability" has replaced "mental retardation" as the appropriate term. Many advocates for those with special needs condemn the use of the word "retard" or "retarded" in any derogatory context. Using either of this words, in any context, is hurtful and suggests that people with disabilities are not competent.
Thursday, October 6, 2016
Day 6: Down Syndrome and Families
Day 6 - How will having a child with Down syndrome affect my family?
According to a study published by Dr. Brian Skotko in 2011 (found here):
According to a study published by Dr. Brian Skotko in 2011 (found here):
- 99% of parents/guardians said they loved their child with Down syndrome
- 79% felt their outlook on life was more positive because of their child
- 5% felt embarrassed by their child
- 4% regretted having their child
Of siblings age 12 and older:
- 94% expressed feelings of pride about their sibling
- 7% felt embarrassed by their sibling
- 4% would "trade their sibling in" for another
- 88% said they felt they were better people because of their sibling with Down syndrome
Of siblings age 9-11:
- 97% said they loved their sibling
- 90% felt their friends are comfortable around their sibling
People with Down syndrome:
- 99% said they were happy with their lives
- 97% liked who they are
- 96% liked how they look
- 86% indicated they could make friends easily
- 4% expressed sadness about their life
The parents surveyed reported learning a variety of life lessons, the top five being personal self-growth, patience, acceptance/respect, love, joy.
What, exactly, does this show? It shows that raising a person with Down syndrome is a largely positive experience and people with Down syndrome are happy with their lives. Love them, value them. Your life will change immensely (for the better) because of your child.
Subscribe to:
Posts (Atom)