Does anyone have info on edwards synd. or trisome 18?

Question

I carried a baby too four an a half months and it had edwards syndrome. My sister in law carried her baby full term and lost the baby a few days after birth. I am always looking for new info.

Answer 1

There are 23 pairs of human chromosomes. In Trisomy 18 (Edwards syndrome), there is an extra chromosome with the 18th pair. Like Trisomy 21 (Down syndrome), Trisomy 18 affects all systems of the body and causes distinct facial features. It is estimated to occur in 1 in 6,000-8,000 live births. Unfortunately, about 95% of fetuses die before birth, so the actual incidence of the disorder may be higher. Of those born, approximately 80% are females. Trisomy 18 affects individuals of all ethnic backgrounds.
Symptoms
Trisomy 18 severely affects all organ systems of the body. Symptoms may include:

Nervous system and brain - mental retardation and delayed development (100% of individuals), high muscle tone, seizures, and physical malformations such as brain defects
Head and face - small head (microcephaly), small eyes, wide-set eyes, epicanthal folds, small lower jaw
Heart - congenital heart defects (90% of individuals) such as ventricular septal defect and valve defects
Bones - severe growth retardation, clenched hands with 2nd and 5th fingers on top of the others, and other defects of the hands and feet
Malformations of the digestive tract, the urinary tract, and genitals
Diagnosis
The physical appearance of the child at birth will point towards Trisomy 18. Before birth, ultrasound can detect abnormalities in the fetus. Genetic testing by amniocentesis before birth or blood test after birth can confirm the diagnosis. Ultrasounds of the heart and abdomen can detect abnormalities, as can x-rays of the skeleton.

Treatment
Medical care for individuals with Trisomy 18 is supportive, and focuses on providing nutrition, treating infections, and managing heart problems. During the first months of life, infants with Trisomy 18 require skilled medical care. Due to the complex medical problems, including heart defects and overwhelming infections, infants have a 5% chance of surviving to age 1 year. Advances in medical care over time will, in the future, help more infants with Trisomy 18 live into childhood and beyond.

for UK support group see http://www.soft.org.uk/ - I cant find support groups for US based families, sorry.