For Down Syndrome Awareness Month this past October, I posted one fact every few days (on my Instagram account: @wonderlandmommyblog) to increase knowledge about Down syndrome. I compiled all of the facts in one cohesive list below.
I hope this helps you learn a little bit more about Down syndrome today. Enjoy!
Fact 1
There are three different types of Down syndrome (aka: Trisomy 21):
1.) Nondisjunction: This is the most common type of Down syndrome and accounts for 95% of all cases. Blood work confirmed that this is the type of Down syndrome that Alice has. Nondisjunction occurs when there are three, rather than two, number 21 chromosomes present in every cell of the body. Instead of the usual 46 chromosomes, a person with nondisjunction Down syndrome has 47. It is this additional genetic material that alters the course of development. Nondisjunction Down syndrome is not hereditary and does not "run in families." It is a completely random, chance happening that occurs at conception.
2.) Translocation: This is the second most common type of Down syndrome and accounts for 4% of all cases. In translocation, part of chromosome 21 breaks off during cell division and attaches to another chromosome. While the total number of chromosomes in the cells is still 46, the presence of an extra part of chromosome 21 still results in Down syndrome. Unlike Trisomy 21, translocation Down syndrome can be inherited. Parents of kids with translocation can be carriers of the condition.
3.) Mosaicism: This only accounts for 1% of all cases of Down syndrome. It occurs when the nondisjunction of chromosome 21 takes place in one—but not all—of the initial cell divisions after fertilization. When this occurs, there's a mixture of two types of cells, some containing the usual 46 chromosomes and others containing 47.
Fact 2
When the doctors told us that Alice might have Down syndrome, I thought, “Well, that can’t be the case because I’m only 32 and only older moms have kids with Down syndrome.” I quickly learned that this is a common misconception. Although the chance of having a baby with Down syndrome does slightly increase as women age, 80% of babies with Down syndrome are born to women under age 35.
Out of all the girls I’ve met through my DS mama groups, only one was older than 35 when she had her son with Down syndrome. It can happen to anyone at any age.
Fact 3
50% of babies with Down syndrome are born with a heart condition. The other half of babies born with Down syndrome have no heart condition. We are so fortunate because Alice is in the half that has no heart problems.
Babies born with Down syndrome can also have hearing problems (sometimes failing their newborn hearing screen), vision problems, blood disorders, difficulty with feeding, constipation problems, thyroid problems and hip issues. All babies born with Down syndrome are evaluated shortly after birth for these issues. We are so lucky that Alice has ZERO health issues! She passed all tests with flying colors.
She is a happy, healthy, downright perfect little girl. ð
Fact 4
About a month after a child with Down syndrome is born, he/she is typically evaluated by the local early intervention team.
In Ohio, this program is called Help Me Grow (helpmegrow.ohio.gov). When Alice was evaluated by Help Me Grow when she was three weeks old, we had one person from each specialty come to our house for the evaluation: a speech therapist, an occupational therapist and a physical therapist. They did their assessments and decided that the only area that Alice needed some extra help in at that time was physical therapy. Babies with Down syndrome tend to have hypotonia (low muscle tone), and early physical therapy can really help them build muscle and get stronger.
At three weeks old, Alice began weekly physical therapy sessions with an awesome PT named Rachel. Week by week, Alice got stronger and stronger. When we moved to Cincinnati when Alice was three months old, we were assigned to a new PT in our new county. Her name is Kathy. She is also awesome! She said that Alice is doing so great that she only needs to come over for PT sessions once every other week now. I also have to mention that all Help Me Grow therapists come to your house and the service is completely free.
Alice is hitting all of her milestones right on track, right when Lucy did, and I know that a lot of this great progress is due to the early intervention from Help Me Grow. We love this program! (I hope that my updates on Alice’s great progress do not come across as bragging. I share them simply because I want to show people that kids with Down syndrome are just like us, and that our lives are in no way worse because we have a child with Down syndrome.)
Fact 5
Kids with Down syndrome look like their parents. It sounds simple. But you might be surprised about how many people don’t know this.
Yes, all kids with Down syndrome share some similar features. This includes flatter faces, shorter nasal bridges and smaller ears. But these are all caused by ONE extra chromosome. The other 46 chromosomes come from the parents - half from the mom and half from the dad. So, it’s actually only a very small amount of appearance that results as looking like Down syndrome. The rest is appearance from the parents.
When Lucy was born, almost every single person said, “Wow, she looks exactly like Tim!” When Alice was born, VERY few people commented about who she looks like. That’s sad. :(
Alice is our child. We love her unconditionally. We love everything about how she looks because it makes her Alice. And let’s HOPE she looks like us since she is in fact our kid!
If all you see when you look at Alice is that she has Down syndrome, you need to look again. And next time you see a child with Down syndrome, tell the parents which one you think he/she looks like. It will make their day.
Fact 6
People who have a child with nondisjunction Down syndrome (the type of Down syndrome that Alice has) do not have an increased chance of having another child with Down syndrome.
Our chance of having a baby with Down syndrome in the first place was 1/700! For our next child, our chance will also be about 1/700. We met with a few doctors/geneticists about this, and they all agreed. One doctor did say our chance may be up to about 1% now.
Well, whatever! In the very off chance that we have another child with Down syndrome, then we will have won the lottery twice. And yes, we would love to have more babies.
Fact 7
Every single person who receives a Down syndrome diagnosis for their child is shocked, scared, heartbroken and devastated. Every single one.
I know we were. I thought, “God, I’m not the right person to have a child with special needs. And I’m definitely not the right person to have a child with Down syndrome. I don’t know anything about Down syndrome! Why did you choose me for this? You have the wrong person.” I was heartbroken, devastated and lost. But there was Alice... and she was beautiful and perfect and ours.
And those feelings faded after just a few weeks because I realized God doesn’t make mistakes. He gave her to us for a reason. And maybe that reason was to share her story with all of you... so that you’re no longer afraid of receiving a Down syndrome diagnosis for your child.
Two months after Alice was born, I asked Tim to watch the girls one day and I went to Panera and sat there and cried (and had a lot of people staring at me) as I recounted Alice’s entire birth/diagnosis. I wrote it all down because, as I fell more and more in love with Alice, I was slowly beginning to forget those initial feelings of shock and devastation. I didn’t want to forget them because they were real and honest and raw and the truth. And I wanted to write them down so that anyone else who receives a Down syndrome diagnosis for their child in the future can read about our initial feelings and know that they’re not alone.
Today, I wouldn’t change anything about Alice even if I could. She’s perfect exactly how she is, and God made her exactly in His image. I look back and realize that my initial fears were unfounded. Every mom or dad of a child with Down syndrome goes through the same thing. We always come out on top and wonder why we worried so much at first... but only after going through the initial period of grief.
You can read Alice’s entire birth/diagnosis story here.
Fact 8
It is “Down syndrome,” not “Down’s Syndrome.” In 1866, British doctor John Down discovered what is now known as Down syndrome. It was originally called “mongolism” (because of the upward slant of the eyes that was interpreted as looking Asian). In the early 1970s, when Down syndrome really began to be studied and understood more, the term “Down syndrome” was adopted, named after Dr. John Down’s last name. Dr. Down himself did not have Down syndrome, so it’s not possessive. It’s a shame his last name wasn’t something more positive-sounding!
As a collective group, the moms across the country who have kids with Down syndrome have started to rename it “up syndrome.” Click the hashtag #upsyndrome for some adorable kiddos with Down syndrome.
Fact 9
Slightly more boys are born with Down syndrome than girls. For every one girl born with Down syndrome, 1.15 boys are born with Down syndrome.
Fact 10
People with Down syndrome are shorter than average. An adult female with Down syndrome in the United States only has an average height of 4’ 9”!
Fact 11
Down syndrome is a completely random condition that occurs at conception.
When Alice was first born/diagnosed with Down syndrome, I thought I caused it. I didn’t know anything about Down syndrome, so I figured I must have done something wrong to cause this. After all, she grew in me and I carried her for nine months. You can’t imagine the guilt I initially felt, thinking that I caused this for my child.
However, once we talked to a geneticist in the hospital, he taught me that Down syndrome is completely random.
Down syndrome is the most commonly occurring chromosomal condition in the world. It affects people of all backgrounds, races and economic levels. Down syndrome occurs in approximately 1 out of every 700 births. There are 6,000 babies with Down syndrome born in the United States every year. Today, there are 250,000 people in the United States that have Down syndrome.
Down syndrome occurs at conception when two copies of chromosome 21 fail to separate. This results in the baby having three copies of chromosome 21 in each of its cells. This extra copy of the 21st chromosome that causes Down syndrome can originate from either the father or the mother. It is not something that can be prevented. It’s a chance happening and occurs as a random event during cell division very early in fetal development. Down syndrome has nothing to do with anything the mother or father did before or during pregnancy. It’s just as random as a bunch of clovers growing in one field, but only a few of them have that extra leaf, making them lucky four-leaf clovers.
This means that Alice has had Down syndrome her entire life... from the moment she was conceived. God simply knit an extra chromosome into her from the very beginning. “I am fearfully and wonderfully made.” - Psalm 139
When I asked the geneticist if everyone has the same chance of having a baby with Down syndrome, he said, “Yes, everyone has the same chance. One out of 700. But only the lucky few get to have these special babies.” ❤️
Fact 12
Today, people with Down syndrome live long, fulfilling lives... and thank God!
In 1960, the life expectancy of someone with Down syndrome was only known to be about 5 years old. That’s because babies born with Down syndrome were institutionalized and not given basic medical treatment! How sad.
In 1983, the life expectancy of someone with Down syndrome was about 25 years old.
Today, thanks to all of the medical advances and new education about Down syndrome, the life expectancy of someone born with Down syndrome is about 70 years old! The life expectancy of someone born today WITHOUT Down syndrome is 78 years. The reason people with Down syndrome sometimes don’t live quite as long as people without Down syndrome today is because about half of people with DS have heart issues or something else that may take them a bit earlier. We are so grateful to God that Alice has no heart problems or any other medical issues. We expect her to live to be about 150. ðĪŠ
I also can’t say thank you enough to the countless people who reached out to me and said they know someone who has a child with Down syndrome and he/she is a tremendous blessing. That made me feel so much better in such an isolating time.
I’ve compiled these 20 facts in order to show you that there is nothing “wrong” with people who have Down syndrome. We can learn so so so very much from them.
Maybe by sharing Alice’s story, we can help save a life. ð
I hope this helps you learn a little bit more about Down syndrome today. Enjoy!
Fact 1
There are three different types of Down syndrome (aka: Trisomy 21):
1.) Nondisjunction: This is the most common type of Down syndrome and accounts for 95% of all cases. Blood work confirmed that this is the type of Down syndrome that Alice has. Nondisjunction occurs when there are three, rather than two, number 21 chromosomes present in every cell of the body. Instead of the usual 46 chromosomes, a person with nondisjunction Down syndrome has 47. It is this additional genetic material that alters the course of development. Nondisjunction Down syndrome is not hereditary and does not "run in families." It is a completely random, chance happening that occurs at conception.
2.) Translocation: This is the second most common type of Down syndrome and accounts for 4% of all cases. In translocation, part of chromosome 21 breaks off during cell division and attaches to another chromosome. While the total number of chromosomes in the cells is still 46, the presence of an extra part of chromosome 21 still results in Down syndrome. Unlike Trisomy 21, translocation Down syndrome can be inherited. Parents of kids with translocation can be carriers of the condition.
3.) Mosaicism: This only accounts for 1% of all cases of Down syndrome. It occurs when the nondisjunction of chromosome 21 takes place in one—but not all—of the initial cell divisions after fertilization. When this occurs, there's a mixture of two types of cells, some containing the usual 46 chromosomes and others containing 47.
Fact 2
When the doctors told us that Alice might have Down syndrome, I thought, “Well, that can’t be the case because I’m only 32 and only older moms have kids with Down syndrome.” I quickly learned that this is a common misconception. Although the chance of having a baby with Down syndrome does slightly increase as women age, 80% of babies with Down syndrome are born to women under age 35.
Out of all the girls I’ve met through my DS mama groups, only one was older than 35 when she had her son with Down syndrome. It can happen to anyone at any age.
Fact 3
50% of babies with Down syndrome are born with a heart condition. The other half of babies born with Down syndrome have no heart condition. We are so fortunate because Alice is in the half that has no heart problems.
Babies born with Down syndrome can also have hearing problems (sometimes failing their newborn hearing screen), vision problems, blood disorders, difficulty with feeding, constipation problems, thyroid problems and hip issues. All babies born with Down syndrome are evaluated shortly after birth for these issues. We are so lucky that Alice has ZERO health issues! She passed all tests with flying colors.
She is a happy, healthy, downright perfect little girl. ð
Fact 4
About a month after a child with Down syndrome is born, he/she is typically evaluated by the local early intervention team.
In Ohio, this program is called Help Me Grow (helpmegrow.ohio.gov). When Alice was evaluated by Help Me Grow when she was three weeks old, we had one person from each specialty come to our house for the evaluation: a speech therapist, an occupational therapist and a physical therapist. They did their assessments and decided that the only area that Alice needed some extra help in at that time was physical therapy. Babies with Down syndrome tend to have hypotonia (low muscle tone), and early physical therapy can really help them build muscle and get stronger.
At three weeks old, Alice began weekly physical therapy sessions with an awesome PT named Rachel. Week by week, Alice got stronger and stronger. When we moved to Cincinnati when Alice was three months old, we were assigned to a new PT in our new county. Her name is Kathy. She is also awesome! She said that Alice is doing so great that she only needs to come over for PT sessions once every other week now. I also have to mention that all Help Me Grow therapists come to your house and the service is completely free.
Alice is hitting all of her milestones right on track, right when Lucy did, and I know that a lot of this great progress is due to the early intervention from Help Me Grow. We love this program! (I hope that my updates on Alice’s great progress do not come across as bragging. I share them simply because I want to show people that kids with Down syndrome are just like us, and that our lives are in no way worse because we have a child with Down syndrome.)
Fact 5
Kids with Down syndrome look like their parents. It sounds simple. But you might be surprised about how many people don’t know this.
Yes, all kids with Down syndrome share some similar features. This includes flatter faces, shorter nasal bridges and smaller ears. But these are all caused by ONE extra chromosome. The other 46 chromosomes come from the parents - half from the mom and half from the dad. So, it’s actually only a very small amount of appearance that results as looking like Down syndrome. The rest is appearance from the parents.
When Lucy was born, almost every single person said, “Wow, she looks exactly like Tim!” When Alice was born, VERY few people commented about who she looks like. That’s sad. :(
Alice is our child. We love her unconditionally. We love everything about how she looks because it makes her Alice. And let’s HOPE she looks like us since she is in fact our kid!
If all you see when you look at Alice is that she has Down syndrome, you need to look again. And next time you see a child with Down syndrome, tell the parents which one you think he/she looks like. It will make their day.
Fact 6
People who have a child with nondisjunction Down syndrome (the type of Down syndrome that Alice has) do not have an increased chance of having another child with Down syndrome.
Our chance of having a baby with Down syndrome in the first place was 1/700! For our next child, our chance will also be about 1/700. We met with a few doctors/geneticists about this, and they all agreed. One doctor did say our chance may be up to about 1% now.
Well, whatever! In the very off chance that we have another child with Down syndrome, then we will have won the lottery twice. And yes, we would love to have more babies.
Fact 7
Every single person who receives a Down syndrome diagnosis for their child is shocked, scared, heartbroken and devastated. Every single one.
I know we were. I thought, “God, I’m not the right person to have a child with special needs. And I’m definitely not the right person to have a child with Down syndrome. I don’t know anything about Down syndrome! Why did you choose me for this? You have the wrong person.” I was heartbroken, devastated and lost. But there was Alice... and she was beautiful and perfect and ours.
And those feelings faded after just a few weeks because I realized God doesn’t make mistakes. He gave her to us for a reason. And maybe that reason was to share her story with all of you... so that you’re no longer afraid of receiving a Down syndrome diagnosis for your child.
Two months after Alice was born, I asked Tim to watch the girls one day and I went to Panera and sat there and cried (and had a lot of people staring at me) as I recounted Alice’s entire birth/diagnosis. I wrote it all down because, as I fell more and more in love with Alice, I was slowly beginning to forget those initial feelings of shock and devastation. I didn’t want to forget them because they were real and honest and raw and the truth. And I wanted to write them down so that anyone else who receives a Down syndrome diagnosis for their child in the future can read about our initial feelings and know that they’re not alone.
Today, I wouldn’t change anything about Alice even if I could. She’s perfect exactly how she is, and God made her exactly in His image. I look back and realize that my initial fears were unfounded. Every mom or dad of a child with Down syndrome goes through the same thing. We always come out on top and wonder why we worried so much at first... but only after going through the initial period of grief.
You can read Alice’s entire birth/diagnosis story here.
Fact 8
It is “Down syndrome,” not “Down’s Syndrome.” In 1866, British doctor John Down discovered what is now known as Down syndrome. It was originally called “mongolism” (because of the upward slant of the eyes that was interpreted as looking Asian). In the early 1970s, when Down syndrome really began to be studied and understood more, the term “Down syndrome” was adopted, named after Dr. John Down’s last name. Dr. Down himself did not have Down syndrome, so it’s not possessive. It’s a shame his last name wasn’t something more positive-sounding!
As a collective group, the moms across the country who have kids with Down syndrome have started to rename it “up syndrome.” Click the hashtag #upsyndrome for some adorable kiddos with Down syndrome.
Fact 9
Slightly more boys are born with Down syndrome than girls. For every one girl born with Down syndrome, 1.15 boys are born with Down syndrome.
Fact 10
People with Down syndrome are shorter than average. An adult female with Down syndrome in the United States only has an average height of 4’ 9”!
Fact 11
Down syndrome is a completely random condition that occurs at conception.
When Alice was first born/diagnosed with Down syndrome, I thought I caused it. I didn’t know anything about Down syndrome, so I figured I must have done something wrong to cause this. After all, she grew in me and I carried her for nine months. You can’t imagine the guilt I initially felt, thinking that I caused this for my child.
However, once we talked to a geneticist in the hospital, he taught me that Down syndrome is completely random.
Down syndrome is the most commonly occurring chromosomal condition in the world. It affects people of all backgrounds, races and economic levels. Down syndrome occurs in approximately 1 out of every 700 births. There are 6,000 babies with Down syndrome born in the United States every year. Today, there are 250,000 people in the United States that have Down syndrome.
Down syndrome occurs at conception when two copies of chromosome 21 fail to separate. This results in the baby having three copies of chromosome 21 in each of its cells. This extra copy of the 21st chromosome that causes Down syndrome can originate from either the father or the mother. It is not something that can be prevented. It’s a chance happening and occurs as a random event during cell division very early in fetal development. Down syndrome has nothing to do with anything the mother or father did before or during pregnancy. It’s just as random as a bunch of clovers growing in one field, but only a few of them have that extra leaf, making them lucky four-leaf clovers.
This means that Alice has had Down syndrome her entire life... from the moment she was conceived. God simply knit an extra chromosome into her from the very beginning. “I am fearfully and wonderfully made.” - Psalm 139
When I asked the geneticist if everyone has the same chance of having a baby with Down syndrome, he said, “Yes, everyone has the same chance. One out of 700. But only the lucky few get to have these special babies.” ❤️
Fact 12
Today, people with Down syndrome live long, fulfilling lives... and thank God!
In 1960, the life expectancy of someone with Down syndrome was only known to be about 5 years old. That’s because babies born with Down syndrome were institutionalized and not given basic medical treatment! How sad.
In 1983, the life expectancy of someone with Down syndrome was about 25 years old.
Today, thanks to all of the medical advances and new education about Down syndrome, the life expectancy of someone born with Down syndrome is about 70 years old! The life expectancy of someone born today WITHOUT Down syndrome is 78 years. The reason people with Down syndrome sometimes don’t live quite as long as people without Down syndrome today is because about half of people with DS have heart issues or something else that may take them a bit earlier. We are so grateful to God that Alice has no heart problems or any other medical issues. We expect her to live to be about 150. ðĪŠ
Prenatal testing for Down syndrome is not always accurate.
Tim and I chose not to do any prenatal testing for either pregnancy because anything that came up in prenatal testing would not have changed our minds about anything.
However, many people do choose to have blood work and other test done while they're pregnant. In some cases, this is so they can abort if something is "wrong." In other cases, this is so they can simply educate themselves and be prepared if something comes up as abnormal.
But... since Alice was born, I've learned that prenatal testing is not always accurate. When a child in utero does in fact have Down syndrome, it is only detected with blood work about 80% of the time. The other 20% of the time, women receive test results that say their baby does not have Down syndrome, so they are surprised by the news at birth. I have met many of these women since having Alice.
The only way to know with 100% certainty if your child has any abnormalities is to do an amniocentesis. This is a procedure where the doctor goes into the amniotic sac with a needle and drains some fluid. The fluid is then tested for any abnormalities, and those results are 100% certain. This procedure also carries a 1% chance of miscarriage.
The other day I met a girl who has a little girl with Down syndrome and then two boys without Down syndrome. When she was pregnant with her daughter, she and her husband did not do any prenatal testing, so they were surprised at birth by the fact that she had Down syndrome.
When she got pregnant with the two boys, she decided to do prenatal testing (blood work) so they could be prepared for anything. With her first son, everything came back normal. With her second son, the blood work test came back positive for Down syndrome. She and her husband buckled up and prepared to be one of the 0.00071% chance cases of having two kids with Down syndrome. However, when her son was born, he did not have Down syndrome. The testing had been wrong.
I told Tim this story the other day. I said, "Isn't that crazy? Some people might have aborted in their situation, but they didn't... and there ended up being nothing wrong with their baby!" Tim looked at me and said, "Ann. There's nothing wrong with Alice either." Amen. To. That.
Fact 14
No one who just received a diagnosis of Down syndrome for their child wants to hear “I’m sorry.” Again... this might sound like a no-brainer. But after Alice was born, so many people told us that they were “sorry.” Even now when I think about this, it makes me tear up. Why are you sorry? I didn’t understand then and I definitely don’t understand now.
Having a child born with Down syndrome - especially when there were no signs of it prenatally - is a total and complete shock to the system. You go through feelings of shock, disbelief, guilt, frustration, anger and sheer panic. And when someone tells you that they are “sorry”... it makes it a million times worse.
I wrote a blog post shortly after Alice was born that talks about some of the great responses we received and some of the not-so-great responses we received. You can read it here.
Aside from “I’m sorry,” we also heard a lot of “I can’t even imagine” and “Even though she has Down syndrome, she’s still cute.” Please please please never say these things to someone.
In addition, however, we got a lot of amazing responses as well. These include...
No one who just received a diagnosis of Down syndrome for their child wants to hear “I’m sorry.” Again... this might sound like a no-brainer. But after Alice was born, so many people told us that they were “sorry.” Even now when I think about this, it makes me tear up. Why are you sorry? I didn’t understand then and I definitely don’t understand now.
Having a child born with Down syndrome - especially when there were no signs of it prenatally - is a total and complete shock to the system. You go through feelings of shock, disbelief, guilt, frustration, anger and sheer panic. And when someone tells you that they are “sorry”... it makes it a million times worse.
I wrote a blog post shortly after Alice was born that talks about some of the great responses we received and some of the not-so-great responses we received. You can read it here.
Aside from “I’m sorry,” we also heard a lot of “I can’t even imagine” and “Even though she has Down syndrome, she’s still cute.” Please please please never say these things to someone.
In addition, however, we got a lot of amazing responses as well. These include...
- "Alice is a blessing and will no doubt have many lessons to teach us all."
- "Just want to congratulate you on your new baby girl! Although we have not been in this particular situation, we've been in other unexpected situations that at the time seem overwhelming but those exact situations have transformed into our greatest blessings. We are so excited for this new blessing in our family!"
- “I truly believe that God chose you guys as her parents. God chose you.”
- “Your life may look different than you had planned. But you got this. She is perfect. She is exactly the way she is meant to be and in years you'll look back and not trade her for any other way."
I also can’t say thank you enough to the countless people who reached out to me and said they know someone who has a child with Down syndrome and he/she is a tremendous blessing. That made me feel so much better in such an isolating time.
Next time you hear that someone had a baby with Down syndrome... PLEASE don’t say, “I’m sorry.” Give them a genuine “congratulations” and tell them they’re in for the best adventure of their life. And then send them my way so I can give them a hug! ❤️
Fact 15
Half of people with Down syndrome have a Simian Crease and the other half do not.
A Simian Crease is a single horizontal line on the palm of the hand. Alice does not have this line. The lines on her palm look just like ours!
When babies are born, the doctors look at their hands for a Simian Crease. If the baby has it, this can often be the first sign to them that a baby might have Down syndrome. In Alice’s case, she doesn’t have it, so the doctors had to look for other physical characteristics when she was born. The doctor told me she had a few of the characteristics but not others.
Other distinct physical characteristics of people with Down syndrome include: arms and legs that are slightly shorter than normal, some extra skin on the back of the neck, an extra space between the first and second toes, smaller nasal bone, upward-slanting eyes, smaller ears and a flatter face. Alice does not have any of these features except the last three. That’s a reason that nothing was ever detected as being a marker for Down syndrome in utero. She looked perfect on all of her scans! That’s because she is. ð
Half of people with Down syndrome have a Simian Crease and the other half do not.
A Simian Crease is a single horizontal line on the palm of the hand. Alice does not have this line. The lines on her palm look just like ours!
When babies are born, the doctors look at their hands for a Simian Crease. If the baby has it, this can often be the first sign to them that a baby might have Down syndrome. In Alice’s case, she doesn’t have it, so the doctors had to look for other physical characteristics when she was born. The doctor told me she had a few of the characteristics but not others.
Other distinct physical characteristics of people with Down syndrome include: arms and legs that are slightly shorter than normal, some extra skin on the back of the neck, an extra space between the first and second toes, smaller nasal bone, upward-slanting eyes, smaller ears and a flatter face. Alice does not have any of these features except the last three. That’s a reason that nothing was ever detected as being a marker for Down syndrome in utero. She looked perfect on all of her scans! That’s because she is. ð
Fact 16
Kids with Down syndrome are just like other kids!
Before we had Alice, I didn’t realize this. I thought my life would be constant doctors appointments, therapies and more. I thought Alice would never do so many things that Lucy would do. I thought Lucy would struggle because her sister has Down syndrome. I thought Alice’s diagnosis would be a burden.
Now that I know so much about Down syndrome, I realize how wrong I was. We only have the traditional doctors appointments for Alice because she doesn’t have any health problems. We only have one therapy appointment for her and that’s physical therapy twice a month. Alice does everything Lucy did at her age. Lucy doesn’t struggle at all because Alice has Down syndrome. She has no clue that her sister is in any way different. And Alice’s diagnosis is in no way a burden to us.
When Alice was first diagnosed, I remember sitting on my hospital bed crying. I don’t know why, but two thoughts kept going through my head: “Can Alice even be around our dogs?!” and “Will we ever be able to find a babysitter who can watch her?!” Yes, I realize now that those thoughts are crazy. (I’ll chalk it up to being in total shock + crazy hormones.) Obviously, our dogs adore her and she adores them. And as for babysitting... we have about a million people who have volunteered to watch her.
The point of this fact is to share that kids with Down syndrome are just like other kids. Truly. Alice will walk, talk, run, go to regular school. She will play with other kids just like everyone else. She might do certain things a little bit later than typical kids... or maybe she won’t. So far, she’s right on track!
Kids with Down syndrome are just like other kids!
Before we had Alice, I didn’t realize this. I thought my life would be constant doctors appointments, therapies and more. I thought Alice would never do so many things that Lucy would do. I thought Lucy would struggle because her sister has Down syndrome. I thought Alice’s diagnosis would be a burden.
Now that I know so much about Down syndrome, I realize how wrong I was. We only have the traditional doctors appointments for Alice because she doesn’t have any health problems. We only have one therapy appointment for her and that’s physical therapy twice a month. Alice does everything Lucy did at her age. Lucy doesn’t struggle at all because Alice has Down syndrome. She has no clue that her sister is in any way different. And Alice’s diagnosis is in no way a burden to us.
When Alice was first diagnosed, I remember sitting on my hospital bed crying. I don’t know why, but two thoughts kept going through my head: “Can Alice even be around our dogs?!” and “Will we ever be able to find a babysitter who can watch her?!” Yes, I realize now that those thoughts are crazy. (I’ll chalk it up to being in total shock + crazy hormones.) Obviously, our dogs adore her and she adores them. And as for babysitting... we have about a million people who have volunteered to watch her.
The point of this fact is to share that kids with Down syndrome are just like other kids. Truly. Alice will walk, talk, run, go to regular school. She will play with other kids just like everyone else. She might do certain things a little bit later than typical kids... or maybe she won’t. So far, she’s right on track!
Fact 17
Married couples with a child with Down syndrome have a lower divorce rate than couples with only typically-developing children.
In my last “DS fact” post, I referenced sitting on my hospital bed crying after Alice’s diagnosis. I had so many crazy thoughts running through my head. Along with my fear about Alice being around dogs and being able to find a babysitter (ðĪŠ), I also wondered... “Is this going to negatively impact our marriage?” Tim and I have always had a solid marriage, so I didn’t worry that we would crumble. I worried that it would be incredibly stressful on us to have a child with special needs.
However, after doing some research, I learned that a 2008 Vanderbilt study showed that couples with a child with Down syndrome have a much lower divorce rate than couples with only typically-developing kids. The study went on to show that the vast majority of parents who have a kid with Down syndrome have a much more positive outlook on life because of those kids.
This is certainly true for us. Because of Alice, we see the world differently now. It’s tough to explain. But having a child with Down syndrome simply opens your eyes to the world and the beauty of all of its differences. You begin to appreciate things that you never even noticed before. And yes, you begin to see your spouse in a whole new way. It’s cliche and I don’t like to post love-y things about Tim online because those posts are annoyingggg and fake most of the time (just keeping it real), but I will say that I’ve learned how to handle Alice’s diagnosis with grace because of Tim’s pure and loving acceptance of it.
So, it you ever find yourself the lucky mom or dad of a child with Down syndrome... you can worry about your child’s health... you can worry about lining up a therapy or two... but please don’t worry about your marriage. Your child will bring you closer in a whole new way... and make you wonder what you ever worried about in the first place! ð
Married couples with a child with Down syndrome have a lower divorce rate than couples with only typically-developing children.
In my last “DS fact” post, I referenced sitting on my hospital bed crying after Alice’s diagnosis. I had so many crazy thoughts running through my head. Along with my fear about Alice being around dogs and being able to find a babysitter (ðĪŠ), I also wondered... “Is this going to negatively impact our marriage?” Tim and I have always had a solid marriage, so I didn’t worry that we would crumble. I worried that it would be incredibly stressful on us to have a child with special needs.
However, after doing some research, I learned that a 2008 Vanderbilt study showed that couples with a child with Down syndrome have a much lower divorce rate than couples with only typically-developing kids. The study went on to show that the vast majority of parents who have a kid with Down syndrome have a much more positive outlook on life because of those kids.
This is certainly true for us. Because of Alice, we see the world differently now. It’s tough to explain. But having a child with Down syndrome simply opens your eyes to the world and the beauty of all of its differences. You begin to appreciate things that you never even noticed before. And yes, you begin to see your spouse in a whole new way. It’s cliche and I don’t like to post love-y things about Tim online because those posts are annoyingggg and fake most of the time (just keeping it real), but I will say that I’ve learned how to handle Alice’s diagnosis with grace because of Tim’s pure and loving acceptance of it.
So, it you ever find yourself the lucky mom or dad of a child with Down syndrome... you can worry about your child’s health... you can worry about lining up a therapy or two... but please don’t worry about your marriage. Your child will bring you closer in a whole new way... and make you wonder what you ever worried about in the first place! ð
Fact 18
It's very rare for a person with Down syndrome to have a solid tumor cancer or cardiovascular disease, including heart attack or stroke. Seems like there’s some magic in that extra chromosome! ðĪ
However, Alzheimer’s disease is more common in people with Down syndrome. Some new Alzheimer’s research is being done by looking at what’s included in the extra chromosome of people with Down syndrome.
It's very rare for a person with Down syndrome to have a solid tumor cancer or cardiovascular disease, including heart attack or stroke. Seems like there’s some magic in that extra chromosome! ðĪ
However, Alzheimer’s disease is more common in people with Down syndrome. Some new Alzheimer’s research is being done by looking at what’s included in the extra chromosome of people with Down syndrome.
Fact 19
There is a correct way and an incorrect way to refer to people with Down syndrome.
This is what I've learned: An individual with Down syndrome is an individual first and foremost. The emphasis should be on the person, not the disability. As a result, it's correct to say, "A baby with Down syndrome" rather than "a Down syndrome baby” or especially “a Downs baby.” It's also important to note that each person with Down syndrome is their own person. Yes, they have Down syndrome, but that's just a small part of who they are. Each person with Down syndrome has his or her own unique strengths, capabilities and talents. All people with Down syndrome are not the same, just like all people without Down syndrome are not the same. (Please don’t ask me, “Aren’t people with Down syndrome happy all the time?!” No. They aren’t. That is an extremely broad and wrong generalization. They experience all emotions just like everyone else.)
There is a correct way and an incorrect way to refer to people with Down syndrome.
This is what I've learned: An individual with Down syndrome is an individual first and foremost. The emphasis should be on the person, not the disability. As a result, it's correct to say, "A baby with Down syndrome" rather than "a Down syndrome baby” or especially “a Downs baby.” It's also important to note that each person with Down syndrome is their own person. Yes, they have Down syndrome, but that's just a small part of who they are. Each person with Down syndrome has his or her own unique strengths, capabilities and talents. All people with Down syndrome are not the same, just like all people without Down syndrome are not the same. (Please don’t ask me, “Aren’t people with Down syndrome happy all the time?!” No. They aren’t. That is an extremely broad and wrong generalization. They experience all emotions just like everyone else.)
In a similar way, each person with Down syndrome looks different from each other. They all might look like they have Down syndrome to some degree, but each person with Down syndrome also looks a lot like their parents and siblings. A few people have told me, "Alice looks so much like Lucy did as a baby!" This makes me so happy. And she really does.
Fact 20
67-100% of babies with Down syndrome are aborted based on their diagnosis alone. In the US, it is 67-90%. In Iceland, it is 100%.
This one hurts for me.
I don’t like to talk about politics on social media (or ever, really). It’s part of the reason I deleted Facebook over a year ago. I don’t really care about your political views and you probably don’t care about mine either. But there is one stance I have that I never try to hide, and that’s the fact that I am pro-life.
If you’re pro-choice, please don’t stop reading. I have lots of friends who are pro-choice and I love them dearly. I respect your opinion and I’m not seeking to change it.
But these stats hurt my heart. When Tim and I received Alice’s diagnosis, she was already here. But I’ve met so many girls since Alice was born who received prenatal Down syndrome diagnoses. Each time, when the doctor delivered the news, he/she followed it up with... “But you can abort.” You can read one of these stories here.
If we had been given a prenatal diagnosis and the doctor had immediately offered an abortion, my panic would have been 100x worse because if a doctor was telling me it was going to be awful, then it must be!
But here’s the thing... it isn’t awful at all. It’s amazing. Down syndrome isn’t a birth defect. It’s not an error. It’s simply a little bit different. And, at the end of the day, all children are different from each other anyway.
So, if you ever find yourself expecting a baby with Down syndrome, please don’t believe the doctor when he/she tells you how awful it will be. Read the books with caution. If you really want to know what your life with a child with Down syndrome is going to be like, come spend the day with us. Come hold Alice and see how completely normal she is and how much joy she brings to our family. Come over in 5 years and watch Alice in her dance class.
This one hurts for me.
I don’t like to talk about politics on social media (or ever, really). It’s part of the reason I deleted Facebook over a year ago. I don’t really care about your political views and you probably don’t care about mine either. But there is one stance I have that I never try to hide, and that’s the fact that I am pro-life.
If you’re pro-choice, please don’t stop reading. I have lots of friends who are pro-choice and I love them dearly. I respect your opinion and I’m not seeking to change it.
But these stats hurt my heart. When Tim and I received Alice’s diagnosis, she was already here. But I’ve met so many girls since Alice was born who received prenatal Down syndrome diagnoses. Each time, when the doctor delivered the news, he/she followed it up with... “But you can abort.” You can read one of these stories here.
If we had been given a prenatal diagnosis and the doctor had immediately offered an abortion, my panic would have been 100x worse because if a doctor was telling me it was going to be awful, then it must be!
But here’s the thing... it isn’t awful at all. It’s amazing. Down syndrome isn’t a birth defect. It’s not an error. It’s simply a little bit different. And, at the end of the day, all children are different from each other anyway.
So, if you ever find yourself expecting a baby with Down syndrome, please don’t believe the doctor when he/she tells you how awful it will be. Read the books with caution. If you really want to know what your life with a child with Down syndrome is going to be like, come spend the day with us. Come hold Alice and see how completely normal she is and how much joy she brings to our family. Come over in 5 years and watch Alice in her dance class.
“Your baby has Down syndrome” might be one of the scariest things you’ll ever hear in your life. It is a shock to the system and you will go through grief and sadness you’ve never experienced before. But that will quickly fade and it will turn to joy and gratitude and love and a fierce protectiveness of your child. And your strength will surprise you. And, all the sudden, God will have given you a gift that you can use to change so many perceptions.
In conclusion
I’ve compiled these 20 facts in order to show you that there is nothing “wrong” with people who have Down syndrome. We can learn so so so very much from them.
Maybe by sharing Alice’s story, we can help save a life. ð
Comments
Post a Comment