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trisomy 13 exact name is patau syndrome it is due to an additional copy of a chromosome 13

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Trisomy 13 (also known as Patau syndrome) - MN Dept. of Health

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For Providers: This information meets the requirements of the Prenatal Trisomy Diagnosis Awareness Act (MS 145.471) which requires educational materials be given to pregnant women following a positive screening test for trisomy 13 (Patau syndrome).

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people who have trisomy 13 are septal to heart defects, spinal cord abnormalities, or brain. also very small or poorly developed eyes. they also have a chance to have extra fingers or toes. or they may also have an opportunity to have a (cleft lip) or even a (cleft palate)

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Trisomy 13 is a chromosomal condition associated with severe intellectual disability and physical abnormalities. Explore symptoms, inheritance, genetics of this condition.

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the link is https://www.openmed.co.in/2021/11/patau-syndrome-aka-trisomy-13.html

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link for picture https://www.researchgate.net/figure/Patau-syndrome-or-trisomy-13-is-indicated-by-the-karyotype-showing-47-XY-13_fig4_355648057

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there is a study that was published by Collins and colleagues from the University of Arkansas for medical science showed that there is a way to double their life spans with heart surgery. But there still is no cure for it with all the research going on for it but there is a lot of research to help the ones living with trisomy 13.

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It was once unusual for children with Down syndrome to have surgery to repair heart defects that are associated with the disorder. "Back in 1975, folks would've said there's nothing we can do to help those babies. But now people have proven if you do heart surgery early, patients with Down syndrome can live to adulthood and be active members of their community. The difference it makes for them is tremendous," says Stanford pediatric cardiologist Thomas Collins, MD.

Collins believes new research might also change attitudes about performing surgery for others who, like Down syndrome babies, are born with a third copy of a chromosome - in this case, babies with trisomy 13 or trisomy 18.

In a recent study published in Pediatrics, Collins and colleagues from the University of Arkansas for Medical Sciences showed that heart surgery can more than double the life spans of babies with trisomy 13, also called Patau syndrome, or trisomy 18, also called Edwards syndrome.

Birth defects and disabilities are far more severe in Patau and Edwards syndrome babies than they are in Down syndrome babies, who can live for many decades. Many Patau and Edwards syndrome babies die within hours or days of birth and most don't live past a year old.

Their heart conditions are often treated with standard medical care - blood pressure medication, ventilators and intravenous fluids. Surgery is rarely an option. "The thought has been it doesn't make sense to undertake a major heart surgery if the patient's death within a few months is a near certainty," Collins says.

Extending the lives of these babies means they still might not live past the age of 2, but even that improvement gives parents more time with their children and more options for care, Collins points out. It also gives specialists more time to develop treatments for other health issues, such as breathing difficulties.

For their study, researchers used data on nearly 1,600 trisomy 13 and 18 patients from 44 children's hospitals across the United States between 2004 and 2015. They found that heart surgery increased survival and hospital discharge on average from 33 percent to about 67 percent and that the benefit lasted through two years of follow-up, Collins says.

"Especially for trisomy 18, the number of babies that survive more than doubles after surgery," he says.

Most infants in the study were admitted at less than a day old, and 51 percent of infants in the study who had congenital heart defects died in the hospital or were discharged to hospice.

Collins says he hopes the research will change how doctors approach treating Patau and Edwards syndrome babies once heart issues are addressed. He says he plans to study more than 3,000 trisomy 13 and 18 patients to determine how their collective health problems fit together, with a goal toward creating a guideline for treatment priorities.

"Surgery gives parents the option to say, 'We're going to do everything we can for our baby,'" Collins says. "And, now we've shown that heart surgeries could allow parents to take their babies home from the hospital, and have them for two years or beyond, as opposed to two weeks."

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Heart surgery could help babies with trisomy 13 and trisomy 18 live longer

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It was once unusual for children with Down syndrome to have surgery to repair heart defects that are associated with the disorder. "Back in 1975, folks would've said there's nothing we can do to help those babies. But now people have proven if you do heart surgery early, patients with Down syndrome can live to adulthood and be active members of their community.

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Couldn't fine something directly related to Trisomy 13 

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SOFT is a national, non-profit organization meant to support parents expecting a child with Trisomy 13 or have a child with Trisomy 13. They also support other chromosomal disorders.

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Trisomy 18, Trisomy 13 and Related Disorders

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Trisomy 18, Trisomy 13 and Related Chromosome Disorders

A must-see video!
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A new video abstract has been added: Eliciting Narratives to Inform Care for Infants With Trisomy 18

The Support Organization for Trisomy 18, 13 and Related Disorders is an IRS 501(c)(3) non-profit organization that has helped families having children with trisomies for over three decades and is recognized as a primary source of information about these disorders.

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SOFT is a primary source of family support and medical information for children having a trisomy condition. Read about SOFT's annual family & medical conference!

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Trisomy 18, Trisomy 13 and Related Chromosome Disorders A must-see video! . A new video abstract has been added: Eliciting Narratives to Inform Care for Infants With Trisomy 18 The Support Organization for Trisomy 18, 13 and Related Disorders is an IRS 501(c)(3) non-profit organization that has helped families having children with trisomies for over three decades and is recognized as a primary source of information about these disorders.

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Prevalence of Trisomy 13 (Patau Syndrome)

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Prevalence of Trisomy 13 (Patau Syndrome)

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Trisomy will occur between 1 of 10,000 to 1 of 16,000 births. The risk of this happening again in a pregnancy is a %1 chance. Most cases are not inherited, but instead formed by abnormalities in egg or sperm cells.

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For Providers: This information meets the requirements of the Prenatal Trisomy Diagnosis Awareness Act (MS 145.471) which requires educational materials be given to pregnant women following a positive screening test for trisomy 13 (Patau syndrome). An acceptable alternative to this factsheet called "Understanding Prenatal Screening and Diagnosis" is available through the Lettercase National Center for Prenatal and Postnatal Resources. This information is available online through a web app or by requesting free print materials on their website.

Condition Description

Trisomy 13, also called Patau syndrome, is a severe chromosomal condition, with multiple malformations due to an additional copy of all or part of chromosome 13. The cause of this additional copy of chromosome 13 is unknown. Babies are usually identified at birth due to several recognizable physical features but the diagnosis is confirmed with genetic testing. Individuals with trisomy 13 often have heart defects, brain, or spinal cord abnormalities. Babies may be small at birth and have characteristic facial appearance along with poor muscle tone. Some of these features include: a small head size (microcephaly), small eyes (microphthalmia), cleft lip/palate, and variations in ear shape.

Prevalence

Trisomy 13 occurs in 1 of 10,000-16,000 births and the incidence increases with increased maternal age. The risk of recurrence in future pregnancies is 1%. Most cases are not inherited and result from random formation of eggs and sperm in healthy parents.

Our program has been tracking Trisomy 13 among live births in select counties since 2005 and are gradually expanding statewide.

Using data from births to Hennepin and Ramsey county residents between 2012-2016, we found that fewer than 1 baby was born with Trisomy 13 per 10,000 births.

Using this data, we estimate about 6 babies are born with Trisomy 13 every year in Minnesota.

Common Associated Conditions

Babies with trisomy 13 will have a characteristic group of problems that may include the following: microcephaly (small head size), cleft lip and/or cleft palate (facial and/or oral defect), omphalocele (abdominal defect), spina bifida (open spine defect), microphthalmia (small eyes), anophthalmia (absent eyes), scalp defects, polydactyly (extra fingers and toes), cryptorchidism (undescended testes), omphalocele (infant's intestines, liver or other organs stick outside of the belly), holoprosencephaly (anatomic defect of the brain involving the forebrain), kidney defects, and skin defects of the scalp. About 80% of infants with Trisomy 13 will have a heart defect as well. The type of heart defect varies, but most often would be a ventricular septal defect (opening between the lower heart chambers), an atrial septal defect (opening between the upper heart chambers), a patent ductus arteriosis (a blood vessel from fetal life that does not close), or dextrocardia, which is a location of the heart on the right side of the chest instead of the left side.

Short-term Treatment and Outcomes

Parents of a baby with Trisomy 13 face many difficult decisions regarding the care of their child. Babies will be given comfort care, and 80% will not survive past the first month of life. Most will not live past the first week, regardless of medical intervention. Despite good caloric intake, many babies with chromosomal defects will show slow growth. Parents will be offered genetic testing and counseling.

A few children are less severely affected and will overcome many of the difficulties; those babies should receive regular child care visits for immunizations and anticipatory guidance, with screening at frequent intervals for vision and hearing difficulties, scoliosis, developmental delays and symptoms of other conditions that can be treated.

Long-term Treatment and Outcomes

Virtually all of the 5% of children who survive past the first year will exhibit developmental and growth delays. Early intervention programs and special education will be very important to the relatively small number of children with trisomy 13 who survive the difficult early months.

Common Complications

The list of possible complications is very great because so many body systems are affected with the trisomy 13 condition. Infection and difficulty feeding will be big issues in caring for these babies.

Implications for Children's Development

The birth of a medically fragile child is difficult and families will find support from other families who have experienced similar circumstances. Parents often learn from other parents how to be the advocates for their child's needs. Support groups can be found on the internet as well as in many communities for many of the day-to-day caretaking challenges of parents. Decision-making for children with chromosomal defects is difficult and complex and parents need information and support from their medical providers and community. Listed below are organizations that provide practical information and support for families with a child with trisomy 18.

Additional information and resources for families are available.

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Trisomy 13 - Minnesota Department of Health

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For Providers: This information meets the requirements of the Prenatal Trisomy Diagnosis Awareness Act (MS 145.471) which requires educational materials be given to pregnant women following a positive screening test for trisomy 13 (Patau syndrome). An acceptable alternative to this factsheet called "Understanding Prenatal Screening and Diagnosis" is available through the Lettercase National Center for Prenatal and Postnatal Resources.

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Treatment for Trisomy 13 (Patau Syndrome)

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Treatment for Trisomy 13 (Patau Syndrome)

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There are no treatments for Trisomy 13, but physical therapy and surgeries can be used to help the baby or child to improve their lives. Most doctors decide to wait for surgery on babies because it can be very hard to determine their life span, especially if their symptoms are more mild.

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It can be extremely difficult to hear that your unborn baby has trisomy 13, also known as Patau Syndrome. You probably have a lot of questions about what caused it and whether or not it can be treated.

But it's better that you know everything you can about this chromosomal disorder as early in your pregnancy as possible. That way you can discuss all of your options with your doctor and determine what's best for you and your baby.

What is Trisomy 13?

Trisomy 13 is a genetic disorder that your baby gets when they have an extra 13th chromosome. In other words, they have three copies of their chromosome 13 when they should have just two. It happens when cells divide abnormally during reproduction, and create extra genetic material on chromosome 13.

The additional chromosome can come from either the egg or the sperm, but doctors think that the chances a woman will have a baby with any chromosome abnormality go up after age 35.

The extra 13th chromosome causes severe mental and physical problems. Unfortunately, most babies born with it don't live past their first month or year. But some can survive for years.

That's because there are two different kinds of trisomy 13. Babies can have three copies of chromosome number 13 in all of their cells, or in only some of them. The symptoms depend on how many cells have the extra chromosome.

How Is It Diagnosed?

Your doctor might spot physical signs of trisomy 13 during your routine first-trimester fetal ultrasounds. Or it could show up in tests such as cell-free DNA screening (NIPT) or the PAPP-A (pregnancy-associated plasma protein A).

These are all screening tests, which means they can't tell your doctor whether your baby definitely has trisomy 13. They only alert your doctor that your baby is more likely to have trisomy 13, and that you need more tests to confirm it.

Your doctor likely will recommend you have a chorionic villus sampling (CVS) or amniocentesis to be 100% certain.

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Trisomy 13: What is it and what are the causes?

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It can be extremely difficult to hear that your unborn baby has trisomy 13, also known as Patau Syndrome. You probably have a lot of questions about what caused it and whether or not it can be treated. But it's better that you know everything you can about this chromosomal disorder as early in your pregnancy as possible.

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Inheritance of Trisomy 13 (Patau Syndrome)

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Inheritance of Trisomy 13 (Patau Syndrome)

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For inheritance, it does not depend on a chromosome the parent is carrying, but it depends on random events with the egg or sperm. The parents can even be healthy but still have a child with Trisomy 13. Translocation Trisomy 13 can be inherited, on the other hand.

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Trisomy 13 is a chromosomal condition associated with severe intellectual disability and physical abnormalities. Explore symptoms, inheritance, genetics of this condition.