Learning that your unborn baby has Down syndrome can be very difficult to hear. This unexpected news may generate a wide range of emotions and unanswered questions. F.R.I.E.N.D.S. is here to assist you as you prepare for the birth of your new baby. Our Parent Liaisons can provide Peer to Peer visits that give you the support and guidance you need and if you wish we can help you to connect with other parents who have received a prenatal diagnosis. To request a visit send an email to firstname.lastname@example.org or call anytime (813)245-2782.
For New & Expectant parents – In addition to Peer to Peer visits we offer our F.R.I.E.N.D.S. Parent Packets. The packets are free and provide vital Down syndrome and special needs information from national and local agencies. Also included is a free copy of the book “Babies with Down Syndrome, A New Parent’s Guide” and cute onesie for your baby.
F.R.I.E.N.D.S. Parent Packets are available in English/Spanish and a bilingual Parent Liaison is available upon request. Click on the Packet Below or send your request to email@example.com or call (813)245-2782.
DOWN SYNDROME FACTS
- Down syndrome is a genetic disorder, it is not a disease. No one knows why it happens, but it afflicts 1 out of every 691 births. There is an estimated 6,000 births a year in the U.S. with an estimated 400,000 individuals living in the U.S.
- Down syndrome occurs when two copies of the chromosome 21 that fail to separate during formation of the egg, resulting in an egg with two copies of the chromosome. When this egg is fertilized, the resulting baby ends up with three copies of chromosome 21 in each of its cells. A lot of words, we know, but it just means that they have an extra piece of the 22st chromosome. This extra piece causes the intellectual disability.
- Common physical traits are low muscle tone, small stature, an upward slant of the eyes, and a deep single crease across the palm. Every person with Down syndrome is a unique individual and may possess these characteristics to a different degree, or not at all.
- Down syndrome affects every race, nationality, and socioeconomic status. It does not discriminate.
- The incidence of births of child with Down syndrome increases with the age of the mother, but due to higher fertility rates in younger women, 80% of children with Down syndrome are born to women under the age of 35yrs.
- 90% of families, in the U.S., who receive a diagnosis of Down syndrome choose to terminate. In Norway, it’s 100%. We are not advocating for pro-life vs abortion, but the problem is the blood test as it has a chance for error. If your blood test shows a high probability of your child having a genetic disorder we recommend that your request the only true tests, a Chorionic villus sampling, (CVS) or amniocentesis with a confirmation of an Ultra sound.
- Outdated and inaccurate information about Down syndrome is being provided to pregnant women. Our children can and do walk, talk, learn, smile with delight, and love you to pieces! They continue to learn, but at a slower pace. It just takes them a little longer, nothing wrong with that.
- People with Down syndrome have an increased risk for certain medical conditions such as congenital heart defects, respiratory difficulties, hearing problems, childhood leukemia, thyroid conditions and have a higher percentage of developing Alzheimer’s disease. Many of these conditions are treatable so most people with Down syndrome lead healthy lives. Life expectancy for people with Down syndrome has increased from 25 in 1983 to 60 today.
- Some medical professionals still believe lifesaving procedures should be denied a person with Down syndrome. Our children are denied transplant surgery every year.
- No one can predict what your child can do. You’ll be surprised by all that they can do.
- Most have mild to moderate ranges of intellectual disability, but all have a wide variety of abilities and some have even made some major accomplishments.
- Some of us are famous and have their our own TV show! Most will finish school, and some will advance to college. They proudly hold jobs, fall in love, get married, and live fulfilling lives.
- All people with Down syndrome have cognitive delays, but the effect is usually mild to moderate and is not indicative of the many strengths and talents that each individual possesses.
- Don’t get us wrong, sometimes life has its challenges. We are predisposed to certain medical conditions, congenital heart defects, Sleep Apnea, and early Alzheimer’s disease. On the plus side, did you know that it is rare for a person with Down syndrome to have a solid tumor cancer or cardiovascular disease, including heart attack and stroke. Which means we may hold the key to the cures for some types of cancer and Alzheimer’s disease.
- Appropriate medical care for children and adults with Down syndrome is very important. It can make a major difference for that person’s physical and intellectual development.
- Early intervention for babies with Down syndrome is very important. The first five years can make a major difference for that child’s physical and intellectual development. Make sure to find your local Agency for Person's with Disabilities to sign them speech, OT, and PT.
- Quality educational programs, a stimulating home environment, good health care, and positive support from family, friends, and the community enable people with Down syndrome to realize their life aspirations and lead fulfilling lives.
- If you are pregnant, F.R.I.E.N.D.S. can help. We give you the facts about Down Syndrome. Because no one knows what the future holds. We are more alike than you think. We need the same love and care as our peers. We have the same aspirations and desires. We can and want to live independently. We can work, volunteer, and vote. We want the equality and future that we deserve.