I have a couple of questions about Down Syndrome

[Arugula Latte]

I just read in the newspaper that, in the 1960s, the average person born with Down Syndrome was only expected to live to age 3, but now "with medical advances," that age has been raised to 51 or so. My question, why did people die at such an early age of Down Syndrome? Why can they live so much longer now? Thanks for any insight. :hi:

[Warpy]

1. Downs often (but not always) occurs with other birth defects,

some of which can be quite serious, like having the heart's major vessels going the wrong places. In the 1950s, we didn't have the open heart surgeries that can repair such defects in infants (or in older children, for that matter). The prognosis for most Down's children was terrible in the 1950s, both for that reason and because people simply underestimated their capability to learn.

Now people born with Down's can have their other birth defects corrected and be educated to the point that they can hold jobs and live quite independently, although they will always need help with things like balancing their checkbooks and paying their bills.

Down's patients were always my favorites. I never met a single one with a capacity for meanness.

[tatertop]

4. When Downs individuals were feared and unwanted

they were placed in asylums
with the insane.
Due to their inherent extremely sensitive and
gregarious nature they must have suffered inconceivable anguish
in that violent environment, caught between the animosity of the workers
and the unrelenting shrieking of the inmates.

[tatertop]

2. I have a Down Syndrome brother

He was born with a heart condition.
They often have serious respiratory problems
such as potentially lethal croup that would have been untreatable
years ago.

[gordianot]

3. There was culture of neglect for children with disabilities in the past.

I am old enough to have seen some of the horrible institutions they were placed. Parents were often told to place their children in these institutions at birth. My guess is this may account for what you are describing, I have never heard this statistic. I know students with Downs that function very well in school, hold jobs, learn skills. We have come a long way from those days where institutional placement was the norm.

There are many health issues that are treatable today than in the timeline of the 60's. Adults with Downs are at much greater risk to develop Alzheimer's, no one seems to know exactly why.

[Arugula Latte]

7. I was surprised by the extreme difference in the statistic.

I could see an improvement of, say, ten to 15 years in longevity, but to go from basically a toddler to a middle-aged adult is a huge leap, and that's what sparked my interest. I wondered what could account for such a big improvement. I'm glad so many strides have been made.

[China_cat]

9. Even non-Down's babies

die earlier if they aren't held and given connection to other human beings. Handicapped kids in institutional settings got the minimum of care...a propped bottle, a changed diaper. They died because no one gave them the will to live.

People talk about the 'explosion' of autism and ask if the rate hasn't changed, why don't you see a lot of autistic adults? Because they were sent to institutions, kept out of the way and probably died very young. Along with the deaf, who were often misdiagnosed as mentally retarded.

But don't think things have changed all that much. Just a few years ago 'Dr.' Laura Schlessinger told a call-in mother of an autistic child that she should put the child in a 'home' and forget she ever existed.

[Catffienated]

10. Love and Care

You are so right....everybody needs love and care

[demigoddess]

5. The kids also lived longer being kept at home. In the 60's they were sent

immediately after birth to a 'home' and usually died within a year or so. In the seventies, parents started refusing to send the kids away and kept them at home, and their life expectancy went way up. They got the medical care they needed and thrived at home with their parents.

[TNDemo]

6. My husband's cousin with Downs is in his 50s.

We have all been amazed at his longevity, especially with his heavy weight. He was always kept at home and has thrived. Thankfully his mother is very healthy but he has siblings ready to take him should something happen to her. He also loves me! He carries pictures of me and Elvis in his wallet.

[Arugula Latte]

8. That's sweet (wallet photo). Hey, you're up there w/ Elvis. That's big!

Glad to hear he's thrived for so long.

[NMMNG]

11. Children with Down's Syndrome often have co-morbid health conditions

And in the past it was customary to leave these conditions untreated as these children were not considered "worthy" of treatment. Often the medical community did not think their "quality of life" was sufficient to warrant treatment for most medical treatments, particularly surgery.

Newborn: (0-1 month)

Congenital heart disease (CHD) occurs in 40-60% of Down's syndrome newborns...Cardiac defects are responsible for a significant degree of morbidity and mortality during the first two years of life. GI tract anomalies are seen in 6-12% of Down's syndrome newborns,...Physiologic complications such as oral motor dysfunction or gastroesophageal reflux are also seen...There is also an increased incidence of congenital hypothyroidism due to absence or aplasia of the thyroid gland which occurs in about 1 to 2% of newborns.

Infancy: (1-12 months)

Transient myeloproliferative disorder (TMD) is sometimes seen in the first few months of life....Newborns with TMD are at increased risk for developing acute non-lymphocytic leukemia (ANLL) before the age of 5 years. Infants with Down's syndrome are susceptible to both viral and bacterial infections of the respiratory tract. Recurrent otitis media, sinusitis, and rhinitis are frequent problems as are bronchiolitis and pneumonia. Lower respiratory tract infections may be a significant cause of morbidity during infancy particularly in those with uncorrected cardiac disease.

Childhood: (1-12 years)

Disorders of thyroid function are particularly common in children with Down's syndrome...Obstructive sleep apnea (OSA) is noted in > 30% of children with Down's syndrome. ..Down's syndrome is associated with approximately 2% of all cases of acute leukemia in children...Within the ANLL group, there is a remarkable increase in the incidence of acute megakaryocytic leukemia in those children with a history of TMD...Children with Down's syndrome are susceptible to subluxation of the hips, patella, and C-spine. Up to 15% of children show x-ray evidence of asymptomatic C-1/C-2 instability,...
http://www.intellectualdisability.info/lifestages/ds_child.htm


So essentially, these children were allowed to die through neglect. Now they are much more likely to get treament similar to that of the "normal" population thanks to advocacy of their parents, other family members, staff and other community members. This has contributed greatly to their life expectancy and quality of life.

[jwirr]

12. The main reason is better health care and advances. Many

with downs have heart problems that can be addressed today. Another reason was that institutional care often led to mass diseases such as flu, etc. which caused premature deaths. When my daughter was institutionalized for 6 months they often told me that medical problems such as reflux was just part of her disease. Today with health care from local doctors we know that this reflux problem can be addressed and even a tube put in to by-pass the esophagus so that she can have a healthy diet. Years ago she would have gradually starved to death from lack of care - the "oh, that is just part of being mentally retarded" idea. Community based living has allowed people to get better objective treatment which gives them the same hopes as we have.

[jwirr]

13. Also many do not remember this but when an obvious

downs baby was born the doctors and nurses in the birth room often laid the child aside and took care of the mother first. Many of these babies were not able to survive this kind of neglect and died then and there.