[TOPIC] Down's Syndrome

my cousin was born with it two years ago. he's the happiest baby I’ve ever seen. He’s very easy to get along with and entertain, he likes it when I read poetry to him.

It’s possible to tell if a baby has down syndrome before birth if the parents care to check (my aunt and uncle knew before hand). They were devastated (but the last pregnancy before that had been a miscarriage, so they were happy to have a kid at all). They explained it to the soon-to-be-older brother and sister, the sister just said they’d have to be extra patient with him.

Down syndrome babies also look different from normal babies, they have big round heads (google pictures).

I think the most interesting thing though is that his little sister, born a year later, passed him by. She walked first, talked first, and shows lots of personality.

Hope it helps!

There's a test that can be done at 20 weeks to find out if a baby has Downs. The test is call an amniocentesis. Google will give you more details.
And yes, there are features that are apparent at birth, mainly being the shape of their eyes, a thickened and shortened neck, protruding tongue, webbing between fingers or toes, and several other signs.
Go to wikipedia for more details. http://en.wikipedia.org/wiki/Down_syndrome
Other problems the child may have include heart problems and muscle problems. Downs kids are generally slower at doing some of the firsts, like holding their head up, sitting, standing simply because of poor muscle control.
I've worked with Downs kids, and they can be the sweetest, most trusting kids to work with.

I have a nephew who has downs. The test they do during Pregnancy is very far on and I think it can, but not always, have negative effects on a baby. So it isn't always done.

When born the baby has lots of wrinkles or folds in the skin. As though they have more skin than other babies. Very much around the eyes area. They eyes are slit shaped and the body lacks muscle so seems really floppy. The baby takes a while to even hold it's own head properly. Problems with the heart is very common. Some more important than others and many babies need to be operated very soon. The hearing is not good and can get worse as it gets older. My little nephew was very long. I think to have rather big feet and hands is common too. They usually have a lot of hair too.

I think the parents might seem very shocked. Not angry...but a quiet....shock.....wondering how this could happen...why...why them. They might not show any excitement at first as though they are dazed until it sinks in. It is nothing against the child of course but that there was no real warning.

Looking after the baby would be relatively easy. They don't cry very much and sleep a lot of the time. Development is very long. Even to hold it's own head....then to sit up on it own.
Children with downs have a love of hair for some reason. They love to put there fingers through your hair and stroke it.
They are very happy and affectionate children and just love to give and receive cuddles all the time. They play happily on their own in their own little world and prefer an intimate one to one relationship rather than being in a crowd. They love music, dancing. Communicating can be difficult but when they have your attention and people are open to them they find their way of getting through to you. It is ideal for them to grow up with brothers and sisters, cousins who all create a motivation for them to get on and do more things but they will always be one step behind.

For the siblings it can only enrich their lives because it help them to become better people. More openminded, respectful compassionate and patient with others. The have to learn that their brother / sister / cousin has the right to what to do whatever they do. They just need a little extra time to do it...and need to be given a helping hand.

My cousin has Down's, and my seminary teacher's daughter has it, and he was our teacher when his wife was pregnant with her, so I'll explain that.

For my seminary teacher, he had told us that his wife was pregnant a few weeks or so previous to this, and he was very happy. Then, one day he just said that on the ultrasound they noticed that her heart was faulty-ish. They did the test, and they found that she had Down's. I remember he was just explaining this, and he just started crying. It was really touching. He said that he was shocked, and that he was scared, but he just wanted to love her, and he felt amazingly honored that God would allow him to take care of this precious soul (in our religion we believe that the mentally retarded and still-born are taken or shielded because their spirits are so precious that God needed them to come to earth, but they needn't be tried and God wanted them to remain pure and unspotted from the evils of the world).

Hi,

I don't want to make too many general comments because every child is an individual, so these are based purely on those I have known, including my sister.

As has been said, Downs can offen be linked with other disorders, so it affects each person differently depending on what other conditions they have. Physical tells that I have noticed especially are the eyes, which are what gave rise to the formerly used but now derogatory term Mongols. Also the little fingers on my sisters hands are bent inwards at the top knuckle. On a mental scale, the majority of Downs children I've known are fairly active and can interact easily with what's happening around them.

Downs kids tend to like music, and physical contact - to the extent that at my sister's school they had to teach the kids to be more restrained when meeting people - ie to shake hands rather than hugging. I imagine this is conditioned into them though from parents and siblings, who are probably more cuddly with Downs kids.

I don't think my parents were particularly shocked when the diagnosis was confirmed - possibly because they were numbed to it after dealing with the more immediate heart issues and emergency ceasarean, and possibly because that's just the way they are - pretty much able to cope with everything the world throws at them. Apparently having one Downs kid can make it more likely that later children will be too - I knew a couple of families with two or three, which must be a bit of a handful for the parents! My parents were reluctant to have my brother tested before he was born, as the old test involves removing cells from the fetus, which can endanger both the mother and the pregnancy. There are however new tests which were reported in New Scientist last week or the week before, which can be done with just a blood sample from the mother - so in the future I imagine testing will be more commonplace, especially among older mothers, for whom Downs can become more frequent.

I think it also had an effect on my brother and I... differenty though, as I was elder and he younger. This meant that I had two years as an only child, with full attention from my parents, whereas he had two elder siblings, one with Downs, which may have meant he had less attention as a kid. I feel though that I've grown up a more patient and less stressed person because of it - whereas I have friends who cannot understand how my family could have coped. Also when my brother and sister were little they shared a pushchair, as despite the 15 months between them they were the same size - people would often ask my parents if they were twins, and my dad eventually gave up trying to explain and just said they were.

Downs children, depending on the severity, can go to special needs schools or to regular schools, where they would probably have special classes as well as mixing with other children. Some bridge the two and go to a regular school for part of the week and a special one for the rest. My sister started at the local special school aged 2.

At adulthood, Downs people can either stay living with parents, or often move into full time residential care, coming home for a night a week, or at weekends - they tend to be incredibly flexible to fit the family's schedule. I imagine this is something that will cross the parents mind so it may be useful to have reassurances for the future.

Some key recommendations for the character would be to meet up with other parents as soon as possible - they can share tips and let them know it's not as bad as might be imagined. Another for both yourself as author and them as characters would be an organisation such as the Downs Syndrome Association, whose website will probably supply lots of support materials for parents.

At 16 weeks most OBs order a blood test for the pregnant woman called Alpha Fetal Protein (AFP) also called Triple Screen or Quad Screen. This test has a high rate of false positives but can show an early indication of Down's or other conditions. Next would be an ultrasound that examines the physical features of the fetus to see if there indications of Down's. Finally the OB generally gives the parent the choice of having an invasive procedure done to confirm any genetic abnormalities (amniocentesis or chorionic vili sampling). Both procedures basically stick a long needle into the womb and sample some of the fluid which will have cells from the fetus in it that can be tested genetically. Both procedures carry a risk of miscarriage so they are always optional and up to the parent to decide whether to have it or not. The results of either of these tests are conclusive.

FYI, the chance of a woman having a child with Down's increases as she gets older (especially over age 35).

Other than these modern prenatal tests there are no symptoms or signs that might indicate a Down's child. However, the classic Down's features would be immediately noticeable at birth.

Thanks very much everyone! That's immensely helpful, you have no idea.
If anyone has more ideas as well I'd welcome anything and everything!

Sarah

Also keep in mind that contrary to McCain's insistence on using the term "autism" in the debate last night whenever Palin's son was mentioned, they are two VERY DIFFERENT disorders. and the terms are NOT interchangeable.

There is a LOT of information on this website: http://www.ndss.org/

I found it invaluable when doing a research paper on Down Syndrome for one of my classes.

My little brother has DS. Shoot me a NaNomail if you have any questions during November.

I have a 10-year-old daughter with Down syndrome (note that the proper usage, at least in the U.S., is Down syndrome: not Down's syndome, and note the capitalization). Be very careful not to rely on generalizations like "They are all such sweet babies" or "You can tell immediately, just by looking." Those are not true statements 100 percent of the time and may not even 60 percent of the time (I'm making my numbers up).

First, the only way to know for certain a baby has DS before birth is by amniocentesis, where they stick a needle in your belly, withdraw amniotic fluid, and do DNA testing on it. I did that with my son, born after my daughter. Routinely, doctors will do a screening testing which CAN indicate LIKELIHOOD, but there are lots of false positives, as someone else said. I've never heard of any old wives' tales that indicate DS.

Second, doctors can often guess that a baby probably has DS at birth (because of typical characteristics like the fold in the back of the neck, the simian crease in the palm, low muscle tone, .etc.), but not always. In our case, I looked at our baby and immediately thought, "That baby has Down syndrome." But our midwife, who was an early interventionist and worked with babies with DS all the time, didn't see it. And when I took her to a pediatrician and told him my fears, he assured me I was wrong. He only agreed to do the testing (a simply blood test) to "set (my) mind at ease."

Third, in many cases, the parents are not only shocked when they learn, but also very upset. I had to grieve the perfect daughter I lost before I could learn to adore the daughter I got, and I'm probably more typical than not. It depends, of course. If the baby's life is at risk, which is often the case, then the diagnosis of DS becomes pretty small, almost irrelevant. I have a friend who had twins, and one died. When they told her the living twin had DS, her response was, "And you think that is BAD news?!" But that's because she had lost the other twin.

Finally, there are many, many physical problems that often come with DS: heart defects, intestinal defects, immune deficiences, problems with teeth and respiratory systems, mental retardation, developmental delays, etc. The ONLY thing I've ever heard that is an out-and-out benefit is: IF the child gets leukemia (and her odds are 13 times greater than a typical child's), then her odds of surviving it are much higher for some unknown reason. Almost all people with DS suffer some degree of mental disability, but it's usually mild. And most have a collection of the other problems as well.

However, of all the parents I know, none of us would choose to skip this experience. It's a wonderful and choice part of human life. We adore our children, and they teach us important things about the value of a human being and what's truly important.

Oops, I missed one of your questions.

The first few months aren't that different because it takes a while for "delays" to show up (almost by definition).

Some potential things: if a baby is born with a heart defect, they may need immediate, open heart surgery. Ditto with digestive problems. Babies with DS are often show "Failure to Thrive" (i.e. fail to grow at appropriate rates, and may sicken easily). Babies with DS often/usually have weak muscles, including the muscles in their cheeks, so they often cannot breastfeed (but not always, but any stretch; I know lots of mothers who had no trouble breastfeeding).

One thing that might be notable: babies with DS are often "easy" babies, "happy" babies, "good" babies (UGH!). They don't necessarily cry when they're are hungry or dirty or tired, or whatever. One of the reasons for this is that their nerve centers often don't register as strongly as yours and mine do, and their brains just don't get the message. For instance, my daughter simply doesn't notice if she'd cold (though she's very quick to notice if she's hot, and hates it). She also doesn't register pain as quickly, so if she were to touch a hot stove (for instance), she might not snatch her hand away immediately, like most children would do. She just doesn't realize she's hurting until she is damaged. As a parent, that's a very frightening thing!

One of the problems with DS is that it's easy to neglect the babies, so for decades, they were lined up in cribs in institutions and given no attention other than feeding. With typical babies, they'll cry, and you HAVE to give them attention (i.e. stimulation). Babies with DS are much less likely to, so they received no stimulation in the institutions, consequently, did not achieve milestones like smiling at people, rolling over, etc. So when scientists did studies about what people with DS were capable of, they did it on a population that had received little to no stimulation, and the studies are very grim indeed. We are learning now that people with DS are capable of MUCH more than we used to believe if they are given appropriate stimulation, especially in the early, developmental years.