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 pre-teen now and in middle school.

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

It’s the greatest feeling on earth!

Down syndrome signs and life expectancy

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.

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.

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.

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.

A straight line goes from one side to the other side of the palm.

5. Decreased or Poor Muscle Tone

Nathan can easily sit down with legs wide open.
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, 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.

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 behavioral problems may include:

  • Short attention span
  • Poor judgment
  • Impulsive behavior
  • 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!

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 problems – More 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 live until adulthood. 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.

Pangga always had her favorite toys with her

Mr Joe Sanderson  from Cleveland, who was born in 1936, and is believed to be the oldest person with Down Syndrome, just turned 80 recently. Another guy, Kenny Cridge, from Britain turned  77 last month.

Mr Sanderson recently celebrated his 80th birthday

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 Taiwan in 2013. Gammy, born with a heart condition, is now 4 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 special needs 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.

 

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

 

 

 

 

About US

THE BEGINNINGS

Welcome to my site, Pangga ta Ikaw, dedicated to help kids with special needs to develop their fullest potential.

We started this endeavor in 2015 to commemorate the first death anniversary of Roxannie, fondly called ” Pangga ” by family and friends.

Pangga is my sister with Down syndrome who died at the age of 46.

Pangga in local dialect means LOVE, and Pangga ta ikaw means ” I love you, ” which I thought is a  very  appropriate  name for our group.

 

Children with special needs are angels in our midst and need our love and support.
The launching of “Pangga ta Ikaw “…….0n a beautiful sunny Sunday, 10 families gathered together to make the passing away of a loved one more meaningful. They shared food, stories, and their generous hearts to support special kids. — at Crescentview Park Winnipeg, Manitoba on June 28, 2015.

 

OUR FAMILY IS SPECIAL

My name is Marita, a practicing Pediatrician in the Philippines before I moved to Canada in 2008. I now work as a Clinical Research Assistant in a large university.

I  always have a soft spot for special kids not only because of Pangga, but I also have another special brother, 2 nephews who have  Down  syndrome and another special niece.

They all bring joy to our families and we truly love them and consider them GOD’s gifts to us.

When Pangga died, our family was at a great loss, she was the first ever to pass away in our family of 12.

It was doubly hard for me, because I was not able to go back home for her funeral. I terribly miss her up to this day.

Our family decided to donate to the Special Education program of special kids in our town, part of the money that family and friends shared  for her burial expenses.

That started my desire to continue the legacy of providing love and support to kids with special needs in our town back home.

OUR PROJECTS

For the last two years ( 2015 to 2017 ), we have helped indigent kids in the Special Education program of the Romblon East Central School in Romblon, Philippines with their transportation expenses to and from school.

Most of these kids have to be accompanied by parents who barely could meet their family’s needs and lots of them live in far-flung barangays, some even cross the sea to attend school.

From October 2017, we have leveled up with our assistance by starting to build a minitherapy area aimed at developing the kids’ social, motor and sensory skills.

This website hopes to promote awareness that kids with special needs are part of our society and they are just like us, who need love and acceptance.

Their parents and families for sure truly care for  them but the whole community has a role of providing support for them to develop the best that they can be.

I would love to hear your comments and insights on my website and if you could help financially for our projects, it would be much appreciated.

If you click this link, it will direct you to our Go fund Me page for our present project, the mini-therapy area.

We thank you so much for your generosity, which will go a long way in supporting our special kids.

If you have questions about our project and how you can help or anything about the articles in this website, please post your comments below/ after the post or email me at admin@panggataikaw.com.

God bless,

Marita

panggataikaw.com