Down Syndrome- Signs and Life Expectancy

When I got pregnant at the age of 43, my greatest fear was having a baby with Down syndrome.

First, because I was an old first – time mom ; second, I had a sister with Down syndrome and lastly, my husband had a brother who was also Downs but died at a young age.

So, when I had my first pelvic ultrasound at around four months, I could not contain my excitement ( coupled with fear ) and asked the doctor ( sonologist ), ” Are you able to see signs in there that my baby will be Downs or not? ”

To my relief, he said, ” Yes, we do usually see a sign, and there is nothing in here. ”

I could have hugged him then and there with the good news.

At around 6-7 months of pregnancy, I had another ultrasound and aside from asking about the gender of my baby, I asked again  the doctor ( my obstetrician ) about the possibility of my precious one having a defect or syndrome.

And of course, when I finally had my son, I looked at him and seeing that he looked normal, I could not believe that this beautiful human being just came out of my body.

He is already a teenager now and in high school. But he will always be ” my baby.”

New moms out there truly understand how it feels looking at and holding your baby for the first time.

Having a baby gives you the greatest feeling on earth!

Even if your baby has some “odd” features, like an upward slanted eye, you will surely feel in your heart that your baby is God-sent and your little angel has finally arrived!

But at the back of your mind, you will have those doubts, ” If my baby has Down syndrome, what are the other signs and about his life expectancy, ” How long will he live? “

What are the signs that your baby has Down syndrome?

These are crucial questions especially for first time moms.

And would also include a mom who before birth knows that her baby would be having Down syndrome or another mom who has no knowledge but looking at her baby for the first time sees something odd about his appearance, or some moms who are not at all aware but the doctor tells them later that their baby has Down syndrome.

I believe they would feel that their world is spinning or the other way around, they would gladly accept that this baby is God-sent and whatever he is, they will take care of him and nurture him no matter what.

Related posts:

Raising a Child with Down Syndrome-( Hailey is now Three ! )

Raising a Child with Down Syndrome-our Baby is our Happy Pill

A Mother’s Unconditional Love… it is For Real

Down Syndrome with Autism-my son has both and he is a Gift from God

Here are the most common signs that you may or may not notice right away at birth:

1. Up Slanted Eyes ( Almond shaped eyes )

The outer corner of the eye will be turned up rather than down. The shape is also very similar to that of someone of Asian descent. 

This is usually the most noticeable physical feature of Down syndrome as your child grows up.

Down syndrome signs-upward slanting eye
Look at the upward slanting of  Nathan’s eyes, isn’t he cute?

2. Flattened Facial  Profile

Because of poor tone in the facial muscles, Down syndrome babies  will not have  much curve from the nose, cheeks or mouth.

Their cheeks seem to hang on the face as well. This is noted  when you look at the baby from the front wherein there is also not much shape to the cheeks.

3. Protuberant Tongue

This is also very typical for babies with Down syndrome. New parents and families  often ask “Why does my baby stick his  tongue out?”

This is either because of a small mouth, large tongue, or simply poor tone.

Down syndrome signs-protruberant tongue
Mark is Nathan’s cousin ; the genes definitely run in our family.

4.  Single Palmar Crease ( Simian Crease )

This single  crease across the palm of the hand is seen in 45% of children with Down syndrome and  is a result of hypotonia as the hand was not held in a tight fist while he was growing in the mother’s womb.

That means 55% of kids with Down Syndrome  do not have this, but if they have, it’s quite typical.

Don’t get confused though, because some normal kids can also have  a single palmar crease.

Down syndrome signs-simian crease
A straight line goes from one side to the other side of the palm.

5. Decreased or Poor Muscle Tone

Down syndrome signs- decreased or poor muscle tone
Nathan can easily sit down with legs wide open.
Down syndrome signs- with hypotonia or poor muscle tone
Look! Mark can fold his legs very cozily like a gymnast.

A baby with Down syndrome always  feels floppy or limp.

When you hold him, it feels like he is  going to slip through your hands or arms and if you lay him across your hand, he will look like a wet noodle.

Growing up, they are so huggable because of this.

This is also the reason why they may develop motor skills later than normal kids, thus, usually learn to turn over, sit up, or walk much later than usual.  Their limbs become so flexible as they grow up.

Pangga, my sister who had Down syndrome and for whom this website is dedicated,  had all those physical signs above, plus she had short stature ( also typical ) as well.

What was very amusing as she was growing up was that she could  pull her legs up to her face very easily even  when she was sitting down.

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Growth and development- how delayed will they be compared to normal kids?

Parents of babies  with Down syndrome need to understand and accept that their angels will develop later than normal kids.

They will definitely learn how to stand, walk and run but not as fast compared to other kids their age.

Different kids develop at their own pace though, so one kid might walk at 2-3 years old, while others walk at around 3-4 already.

Usually, they  can walk on their own between 16 and 42 months with the average being 24 months.

Cognitive learning skills likewise , as well as  thinking,  develop late and impairment  ranges from mild to moderate.

Other common cognitive and behavioural problems may include:

  • Short attention span
  • Poor judgment
  • Impulsive behaviour
  • Slow learning
  • Delayed language and speech development

Again, Pangga learned how to talk and communicate but of course, was not able to sustain good conversations.

Unluckily, she did not have any interventions like therapies because she  grew up in a small town where these were not available.

But she learned how to sing ( She had a beautiful voice ! ) just by listening over the radio and watching television or just hearing songs from other people.

We used to live in a house just a few steps away from a church and even if she did not attend mass regularly, she learned to sing the mass hymns just by overhearing people sing them during Sunday masses.

And boy, Pangga loved to sing that even in the middle of the night when everyone is asleep except her, she would sing at the top of her voice.

When she sang and we would appreciate and clap our hands after her rendition, she would always giggle and have that captivating smile.

What a joy to behold in our family!

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Congenital defects-will they have other illnesses at birth?

1. Heart defects– Almost 50% of these kids have congenital heart disease which     can lead to high blood pressure in the lungs, thus the heart is unable to  effectively and efficiently pump blood, and cyanosis (blue-tinted skin caused by reduced oxygen in the blood) develops.

If severe, this could be a cause of death at an early age.

2. Vision problemsMore than 60% of children with Down syndrome have vision problems, including cataracts (clouding of the eye lens) that may be present at birth.

Other eye problems that could occur at birth include near-sightedness, “crossed” eyes, and rapid, involuntary eye movements.

Pangga had near-sightedness and rapid, involuntary eye movements, the latter was the reason why one of her young nieces  was scared of her and did not want to come close to her aunt.

They need to be seen by an eye doctor as soon as possible to prescribe either glasses or surgery.

3. Hearing loss –  About 70% to 75% of children with Down  syndrome have some hearing loss, sometimes because of   structural defect in their ears.

They need to be screened at birth and have regular follow-up hearing exams.

Later in life, or as these children grow up, some other health concerns may come up, such as infection, epilepsy ( seizure disorder ), usually developing for the first two years of life, gum disease and dental problems, disrupted sleep patterns and sleep disorders ( even obstructive sleep apnea ).

Life expectancy- do they live until adulthood?

Definitely they could!

My sister, Pangga, lived until 46 years old.  But because she reached only a mental age of around 5-6 years old, she was always considered the youngest in our family, even though she had four younger siblings.

Down syndrome- life expectancy could be until adulthood
Pangga lived until 46 but with mental age only of 5-6 years old.

George Wildgust  was born in 1942 and turned 77 in 2019.

Mr Joe Sanderson  from Cleveland, who was born in 1936, and is believed to be the oldest person with Down Syndrome,  turned 80 in 2016. 

Down syndrome life expectancy-Joe Sanderson turned 80 in 2016
Mr Sanderson celebrated his 80th birthday in 2016

Both lived happy, full lives with support of family and friends. I could not find reports though that both are still alive.

The life span of Down syndrome children, however, depends if they have concomitant illnesses, like congenital heart disease and other factors, like development of infections and other health concerns as they grow up.

If properly trained  and supported, some people with Down syndrome can live independently in a home or in an assisted independent arrangement, and a few even develop romantic relationships and even get married.

Many people with Down syndrome are also able to work or  volunteer, thus, able to contribute to the progress of their communities where they live.

In big countries like Canada, the government usually supports people with special needs starting when they are newborns, and even provide assistance for them later so they are able to live independently and have profitable income.

A great blessing

A family who is blessed with a child or children with special needs like Down syndrome, maybe overwhelmed at first, but with full support within the family and the community as a whole especially the government, these kids can grow up and become productive citizens .

You may have learned of a couple from Australia who abandoned their baby with Down syndrome ( named Gammy ) and just got the normal baby ( they are twins ) born to a surrogate mother from Thailand in 2013.

Gammy, born with a heart condition, is now 6 years old and lives with his surrogate mother in Bangkok. The family he is now with may not be related to him by blood, but they feel so blessed to have him in their midst.

Truly, kids with Down syndrome, bring an immeasurable joy to everyone in the family and there may be lots of challenges raising them, but in the end the happiness that they bring in the household surpasses all these.

Down Syndrome-Signs and Life Expectancy

 

Do you have a child with Down syndrome? How does your child bring joy to your family? Please share your stories with us.

Check out these books about Down syndrome. Click the image to buy.Down on the Farm-Down Syndrome signs

Down Syndrome signs
The parent's guide to Down syndrome

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28 thoughts on “Down Syndrome- Signs and Life Expectancy”

  1. Naturally, It’s easy to fall into thinking that everyone with Down syndrome
     looks a certain way and has certain abilities, and that’s the end of
    the story. 

    But it’s hardly the reality. While Down syndrome affects people
    both physically and mentally, it’s very different for each person. And
    there’s no telling early on what its impacts will be. 

    Thank you for this awesome post.

    Reply
    • Right, every person with Down syndrome develops in his own unique way depending on his support and genes. Some grow up with high or almost normal mental capacity while some don’t. Nevertheless, we ought to show them unconditional love no matter what.

      Thanks for reading.

      God bless,

      Marita

      Reply
  2. It is a scary feeling to have a child with Down syndrome. I have come across a few that died at a rather young age and I have also seen some that lived to become adults. It is a scary feeling for mothers to find out that their kid has this disorder.

    But nevertheless they are still humans and should be treated with the same love and care given to a child without this disability. They do need special care and special attention should be given to them because they might face different challenges from what a normal child would face. 

    Reply
    • Hi Manuel,

      I would not consider the feeling scary, maybe challenging is the right term. 

      These kids are so lovable and so easy to please. They may have health issues and developmental delays but with the parents’ unconditional love and support, they grow up to become independent.

      Thanks for reading.

      Marita

      Reply
  3. Thank you very much for sharing this. 

    I have no experiences on Downs Syndrome in our family, however I have had friends who have worked with foundations providing care and opportunities for them.

    I look forward to reading more stories about the challenges you and others have had to negotiate with Down syndrome people. 

    Reply
  4. This is a really awesome article on the subject of Downs Syndrome. I think what is most important to take away from this is regardless of the different deficiencies that children with it grow up having and the different medical issues, they are all a blessing and worthy of having life, no matter how long or short it may be. I know for a fact that what you say is true. People with Downs Syndrome are some of the most joyful I have seen and we could learn something from them! Thanks so much!

    Reply
    • Hi Steve,

      Thank you, people like you who wholeheartedly support our kids with Down syndrome are very honorable.

      God bless,

      Marita

      Reply
  5. Wow!!!
     This is horrible!! This is a great matter of worry to have a baby with down syndrome. Your worries are so natural as you are a mom. Even I got stucked thinking about it. Thanks for such an informative article. This will give knowledge to other moms. specially to know that, having sisters, brothers and other family members with downs increases the chance of having down baby. You have described the syndrome very nicely with sign symtoms. Thanks again for this.

    Reply
    • Hi, 

      There was fear in my pregnancy because of the strong family history and my age, but  of course, if my baby should have Down syndrome, I would still accept him for what he is. Just like the other Down syndrome kids in our family.

      They are God -sent and they bring so much joy to us.

      With this article, if I can help even just one mom to identify if her baby has those signs, so she can seek help right away, then I am happy.

      Thanks for reading.

      Marita 

      Reply
  6. Hi Marita,
    Indeed I am very grateful to read your post on children born with Down syndrome.

    I have a friend who has a child with Down syndrome.I love the strength of this mum friend of mine.

    Indeed these children need our love and support.The parents also need lots of our love.

    Thank you very much and may we continue to show our love for our Maker.

    Reply
    • Hi Felistus,

      I really honor moms of special kids, like your friend, because they do give so much to their children who have special needs.

      Thanks to you as well, who are so willing to help out these moms and the special kids.

      God bless,

      Marita

      Reply
  7. First I want to commend you for the good work you are doing. I know that for any parent, the joy of watching their children thrive and reach their full potential is every parent pride and joy, therefore when a parent discovers that maybe the child will face difficulties in life due to medical conditions like Down Syndrome, then the parent’s worries are raised to the highest level.

    I have to admit that this kind of information is needed especially in developing countries, I am from Kenya and children with Down Syndrome are misunderstood and in some casess, the parents would reject them and leave them at the hospital. Or if they do bring them home, they would keep them hidden.

     But I am happy to report that there are some non-governmental organizations that are helping educate people about these kinds of conditions and other disabilities and they are encouraging the parents to take the children with disabilities to school or to facilities where they can be taught some skills.

    Thank you so much for this article I have learned a lot.

    Rose

    Reply
    • Hi Rose,

      That’s so unfortunate for the kids if they are left in the hospital, unless they are put for adoption and find good parents who are willing to support them and give unconditional love. Or hidden from the public if they are raised by their own parents.

      That’s why information like these are very vital for the new parents.

      I’m happy that there are NGOs helping out these kids in Kenya and other developing countries.

      They do have lots of potential to be the best that they can be. 

      God bless,

      Marita

      Reply
  8. Hi Marita,

    Nice to meet you and you sharing the voice of this quiet topic is inspiring!

    You are so right that your baby is God-sent and the love and gift that your child is from God is immeasurable.

    Thank you for sharing your story and the development of Pangga and the immeasurable Joy that she has brought to your family and the love that you give her.

    I heard about baby Gammy.  Was he born to a surrogate mother in Taiwan or Thailand? That was big news here in Australia.  

    Every life should be valued, cherished and respected.  Most importantly every life is a gift from God. I am touched and inspired that you will share this amazing gift of life with other people and hope your website can reach and touch many people’s hearts – as it touches mine.

    God bless you and your family.

    John

    Reply
    • Hi John,

      Yes, Pangga,  my sister has brought our family so much joy and now that she has left us, we may have gotten used to her not being present physically, but her memories will always be in our hearts.

      Baby Gammy was born to a surrogate mother in Thailand and left there by the biological parents. He is now thriving well with his family.

      Thanks for visiting. God bless,too.

      Marita

      Reply
  9. Reading this post I remembered the day I gave birth to my daughter Hailey.
    The attending physician had a private conversation with my friend who looked after me. I wondered why it had to be private.

    The rest of the night nurses kept talking to each other not knowing that I can overhear them and just pretending I am asleep.
    The day after, I learned of my daughter’s situation.She had all the physical signs but just like what I have mentioned in the previous articles where we were featured, she looked normal to us. However, as she grew older, day by day physical features became more visible.

    Reading this post gives me a feeling of happiness that despite the hardships of taking care of children with special needs they fill a special place in our hearts.

    I hope that God will give Hailey enough time to shower us with her love.

    Reply
    • Hi Emerald,

      So happy to hear from you again. Thanks so much for sharing your story with Hailey in this post: Raising a Child with Down Syndrome-our Baby is our Happy Pill

      What happened to you could happen to any mom who just learns of their baby’s condition just at birth. I know that being unprepared of such news would have brought you some anxiety, perhaps.

      If any mom could read this post and the others in my site, then I’m happy that I am able to shed light to a mom’s dilemma should some confusion occur during the birth and growing up years of their child.

      Having met Hailey a few months back and knowing that she is such a sweet girl, she will continue to give joy and love to you and your whole family.

      God bless,
      Marita

      Reply
  10. Hi Marita, 

    As a quick follow up to my last comment, in your experience/ knowledge is checking if the foetus shows signs of down syndrome at the different scans something that you’d expect all doctors to do; or would you say it’s something you need to ask for specifically, again it’s great information to pass on to my friends who are expecting.

    Thanks

    Nathan

    Reply
    • Hi Nathan,

      There are specific signs in the scan that will show if the baby has Down syndrome.

      I’m sure the doctor will tell the parents if they see those signs, but if they did not tell you anything and you’re scared your baby might have Down’s, you can always ask the doctor for confirmation.

      That’s why some doctors suggest abortion if they see some signs, but for me I would not at all consider that option. But usually, they confirm with amniocentesis, too aside from the scan.

      God bless,

      Marita

      Reply
  11. Hi Marita,

    Thanks for sharing, you can tell that this is a subject that you have experience with and is very “close to your heart”. A couple of my “older” friends are expecting, so I’ll make sure that this information they are aware of . Thanks for covering such a sensitive subject very informatively yet respectably.

    Reply
    • Hi Nathan,

      Like I said in the About Us page, we are a special family, because of Pangga, my sister, plus 2 other nephews with Down syndrome.

      They bring lots of joy and love in our homes, so yes, they are really close to my heart.

      Thanks for reading.

      Marita

      Reply
  12. Hi Marita.
    I enjoyed reading your post, as it brings me back fond memories of my aunt who has Down Syndrome.
    She is in her 40’s now, but with the spirit of a 15 y/o 😀
    Now i live further away but i continue to hear of her cheerfulness and lovely nature.
    When i was a teenager she would love to talk of boys XD and dance, she is amazing and im extremly happy that she was part of my childhood as i believe is thanks to her that i learned more of people with dissabilities and not have uncorroborated fears. I always try to inform people of the misconceptions there is around people with down syndrome. They are very smart and with lots of love and support they can achieve so much!
    So thank you deeply for sharing this info!
    Regards.
    Arlet.

    Reply
    • Hi Arlet,                

      Just like me, you are so lucky to have beautiful memories and experiences in your family, and for you having an aunt with Down syndrome.  

      I’m unlucky though because my sister Pangga passed away already.

      As you said, people with Down Syndrome can be as smart as normal people if given the chance to be trained to be the best that they can be.  And yes, they are always cheerful and so loving.

      Continue to have regular communication with your aunt, they have sharp minds, so she will always remember you.

      Thanks for enjoying my post.

      God bless,
       
      Marita

      Reply
  13. Hi Marita,

    Thank you for this informative and heartfelt post. The personal profiles you share remind me that we are not merely statistics but unique individuals full of potential and hope, and any possible physical and developmental challenges notwithstanding, we can all have a positive impact on those whom we come in contact with, directly and indirectly. Thanks so much for sharing!

    All the best,

    Norman

    Reply
    • Hi Norman,

      Yes, these special kids  are there waiting for our love and care and they can definitely become adults like us, who can impact the society we live in.

      Thanks for your nice comments and for stopping by.

      God bless,

      Marita

      Reply
  14. Hi! Marita,
    Your article is very informative.

    My sympathy to you and your family for your loss of Pangga.

    I admire your charitable works in our country, the Philippines, where people are family oriented. You have a good heart to people with special needs. True, they need special care and attention from society.

    The love that you share to them is immeasurable. With your family’s history of having special kids, being inspired by them, I hope and pray that you have always the power to put in a good cause for all your efforts towards special people.

    You are a woman of a good heart!

    I enjoyed reading your article. It touches my heart and soul!

    All the best!

    Reply
    • Hi Shierly,

      Thank you for your good comments and your sympathy for our loss.

      I feel so blessed being here in Canada that I feel I really have to give back to the special kids in my hometown in the Philippines.

      I am giving my best to this website so I can spread awareness that kids with special needs are everywhere and like normal kids, they need our care and support.

      As well, I want to inspire more donors to help us with our present and future projects.

      God bless,

      Marita

      Reply

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