Tuesday, February 25, 2014
Monday, February 24, 2014
Health Organizations
Some Organizations and websites
1. Trisomy 18 Foundation
http://www.trisomy18.org/site/PageServer
2. Prenatal Partners for Life
http://www.prenatalpartnersforlife.org/
3. Soft-Support Organization for Trisomy
http://trisomy.org/\
4. Hope for Trisomy 18 and 13
http://www.hopefortrisomy13and18.org/
5. Birth Defects http://www.birthdefects.org
Contact info:
1. 173 Keith St. No. 3
Warrenton, VA 20186
810-867-4211 (M-F: 9-5 ET)
T18info@trisomy18.org
2. Prenatal Partners for Life
PO Box 2225
Maple Grove, MN 55311-6745
Tel: 763.772.3868
Fax: 866.870.9175
email: mary@prenatalpartnersforlife.org
3. SOFT’s Headquarters:
SOFT
2982 South Union Street
Rochester, NY 14624
1-800-716-7638
4. Hope for Trisomy 13 & 18
P.O. Box 921
Springtown, TX 76082
Phone: (866)977-6647
fax (866) 977-6647
5. Birth Defect Research for Children, Inc.
976 Lake Baldwin Lane
Orlando, FL 32814 USA
Phone #: 407-895-0802
800 #: --
e-mail: staff@birthdefects.org
Sunday, February 23, 2014
Stories
Children with trisomy 13 or 18 generally do
not survive beyond their first year of life, and those who do are severely
disabled lives a short life. When diagnosed before birth, parents often decide
to have an abortion and those who continue the pregnancy often have a
miscarriage. Parents are
often told 87% said their child would be "incompatible with life",
whilst 50% stated their child would be "a vegetable" and 57% said the
child would have led "a life of suffering". 57% of healthcare providers
said a child with these disabilities would have "ruin their family or life
as a couple" (23 %) Many parents who chose to continue the
pregnancy wants life-prolonging interventions for their child and more than 97%
of the surveyed parents felt that regardless of how lone their child lives or
lived, it will enhance the family’s life.Parents, whose baby is newly diagnosed
with trisomy 18, who join a parental support group often adapt a more positive
image of the diagnosis compared with the predictions of the medical profession.
The majority of surveyed parents reported that the support group helped them to
see their experience in a positive light.
Article
Stories
Peter is a
beautiful boy born with full Trisomy 18. His family found out two days after
his birth that he had this condition. Trisomy 18 was described to them as a
fatal condition with rare survivors who only live a few weeks. Peter's parents
wanted him treated like any other child.
Some difficulties
arose because of this. Peter has had a
P.D.A. ligation, a hernia repair, and a liver biopsy.
Peter's family
cherishes each day they have with him.
They are strongly supported with many prayers from family and friends.
Many doctors and nurses have also given the family much support.
Peter has brought his family closer together and has
inspired them in many ways. He has
taught his siblings many lessons about life and perseverance. Peter is now 9
months old and he is a trisomy 18 survivor
Bella Santorum, the youngest daughter of
Republican presidential hopeful Rick Santorum, was hospitalized.
Bella, age 3, suffers from Trisomy
18, where the survival rate is about 90 percent of
those born with the disorder die in their first year of life. Santorum has
discussed his daughter's condition many times on the campaign trail, describing
her survival as "miraculous."
For more stories:
http://www.prenatalpartnersforlife.org/TouchingOurHearts/TouchingOurHearts.htm
Saturday, February 22, 2014
Did you know...
Trisomy 18 is a geneitc disorder due to an
extra chromosome as it occurs in roughly 1 in 5,000 born infants. Those who are
born with this disorder are usually small size at birth and has various birth
defects. There are different factors that associates with the infant’s
mortality, but the main component is the central apnea which is caused by irregularity in the brain's control of breathing. Other
factors include difficulty in feeding and under development of the lungs.
Survivors
The children who survive beyond a year will
face many challenges such as growth and development delays. As they grow up they have to get routine follow-up checkups, such
as:
Routine child care/anticipatory guidance:
Cardiac evaluation
Eye evaluation
Hearing test
Infant/pre-school program early intervention
Ongoing Support
Routine ultrasound for Wilms tumor
Routine immunization
Referral for feeding clinic if appropriate
Scoliosis check
Thursday, February 20, 2014
Statistics
The most common trisomy is Trisomy 21, also known as Down Syndrome and
the 18 is the second most common trisomy. It occurs in about 1 in 2500
pregnancies, resulting in 1 in 6000 live births. Stillbirths that occur in the
2nd and 3rd trimester are factored in that statistic. Most babies die before
birth or those who do survive during birth live for less than a year.However, a
small number of babies (10% or less) live more than 1 year, with some surviving
into their teens and beyond.
Prenatal Genetic Testing and Birth Defects: Comparison between Trisomy 13 and 18
The number of
babies born with trisomies 13 and 18 were affected by prenatal diagnosis and
the option to end pregnancy in recent years.
l
Prenatal cytogenetic testing
was reported among 71% of trisomy 13 case infants and 76% of trisomy 18 case
infants.
l
Among mothers of case infants
with prenatal cytogenetic tests, 61% of those with infants with trisomy 13 and
60% of those with infants with trisomy 18 had elective terminations.
l
The mother’s age was a risk
factor for both conditions: 46.9% of the trisomy 13 case mothers and 67.1% of
the trisomy 18 case mothers were 35 years of age or older.
l
Among liveborn infants with
trisomy 18, 60.4% were female and 39.6% were male.
Wednesday, February 19, 2014
Trisomy 18 Facts
Trisomy 18 is a genetic
disorder in which a person has a third copy of material from chromosome 18,
instead of the usual two copies where the extra material affects the normal
development.
Trisomy 18 is three times more
common in girls than boys.
Symptoms
·
Clenched
hands
·
Crossed
legs
·
Feet
with a rounded bottom (rocker-bottom feet)
·
Low
birth weight
·
Low-set
ears
·
Mental
delay
·
Poorly
developed fingernails
·
Small
head (microcephaly)
·
Small
jaw (micrognathia)
·
Unusual
shaped chest (pectus
carinatum)
Exams and Tests
An exam during
pregnancy may show signs that the child will have Trisomy 18. It may show an unusually large uterus and extra
amniotic fluid and there may be an unusually small placenta when the baby is
born.
signs include:
·
Hole,
split, or cleft in the iris of the eye (coloboma)
·
Separation
between the left and right side of the abdominal muscle (diastasis
recti)
There are often signs
of congenital
heart disease, such as:
·
Atrial septal
defect (ASD)
·
Patent ductus
arteriosus (PDA)
·
Ventricular
septal defect (VSD)
Tests may also show
kidney problems, including:
· Horseshoe
kidney
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