Trisomy 13 LIFE Expectancy, Pictures, Prognosis, Symptoms and Treatment

Come meet many more

Trisomy 13 Survivors on the Trisomy 13 LIFE Patau Syndrome Group

Those with Survivors sharing Daily Trisomy 13 LIFE, milestones and accomplishments.

www.facebook.com/groups/Trisomy13  Prenatal - Expectant parents support offered also.  *Families are also encouraged to JOIN the SOFT facebook group where all variations of trisomy gather. www.facebook.com/groups/TrisomySOFT 

SOFT is the internet's most complete source of medical and family resources for trisomy 18 & 13. www.trisomy.org 

Meet more families like Natalia on the facebook online support groups /Trisomy13 & /TrisomySOFT

Natalia Marie - Images
(top row) NICU - 11 days, Full trisomy13 Birth to 13 years (4 photo collage -with mold of hand before her extra digits (Polydactyly) were removed, 1 week old picture, Kindergarten photo, and Rainbow shirt standing at age 13.) 2 year photo sitting with some support.
(middle row) Natalia's first wheelchair for alignment 3 yrs old, Playing with her sibling, Gift of Time with Santa
(bottom row) 5 yrs using her reverse k walker with with guidance, 2014 SOFT Trisomy Awareness Shirt at 14 years, Walking and pushing her brother at the Annual SOFT Convention where 100's of Trisomy Families gather each year. www.trisomy.org

Natalia's SOFT Story 
Natalia's Trisomy Favorite Things BLOG - Flipcard design

Natalia was born in 2000. Thankfully she surprised us at birth with her Trisomy 13 symptoms. When given the trisomy 13 prognosis  and trisomy 13 life expectancy, we chose trisomy 13 treatment which IS medical management with any medical condition which they would treat on a typical child. The trisomy 13 patau sydnrome malformations were done. Now we chose to pray and allow good medicine to help our child just as we would do for any of our typical children. Natalia was taken to NICU right after birth and given the appropriate care with the oxygen she needed for the first few days. We left home with a Haberman bottle feeding system for cleft lip and palate.

Back to the hospital at 6 weeks for a g-tube insertion, complete malrotation repair and the rest is history. ~ A Joy-filled life with this very sweet child.

Often families searching for support want to know what trisomy 13 life is like. What can they expect. Surgeries etc.  What kinds of surgeries did your kids need? And what is their functional status at their current age? Are they walking? Talking? Eating on their own at all?My reply back to one women was this:  I want you to not freak out when you hear or see the list of things with these kids. For example my child is 15 yrs old. Can you imagine trying to list all the stuff for your typical 15 yr old. Bangs bruises, stitches. Emotional hurts etc. I can assure you I've said this to many others and others have also said this to me. I've raised 3 other typical kids and frankly they are more work than my trisomy 13 child.  I just traded doc visits and therapy visits instead of ballet, soccer or volley ball games with this one child. Each child is so very different. You just take one day at a time just as you do with your other kids. You adjust along the way, just as you do with your other kids. There was no map or plan with my other kids. Months to years were a surprise. Same with these kids. Families want to know everything. Just do what you can, address issues as they come up, enjoy where you are at ~ at any given moment. You dont want to have spent your time worrying, wasting good moments worrying ... find the JOY in today, we never know what tomorrow will bring. Stay connected on a few facebook support groups ... this one Trisomy 13 LIFE, the SOFT group and if you find others where you are comfortable. I've found I can only follow a few just due to time.

#trisomy13 #PatauSyndrome #trisomy13LIFEexpectancy #trisomy13symptoms #trisomy13pictures #trisomy13prognosis #trisomy13symptoms #trisomy13treatment.

Patau Syndrome - Trisomy 13 stories added in September to the trisomy.org NEWS and UPDATE page

Trisomy.org 

Be sure to check out the wonderful Videos, Slideshows, 

and Family Stories.
You can "follow-this-page" on the NEW Family Stories page 

Caring for Infants with Trisomy 13 - Patau Syndrome from the National Institute of Child Health and Human Development

Caring for Infants with
Trisomy 13 or Trisomy 18
National Institute of Child Health and Human Development




Researchers also found that the timing of the diagnosis impacted the infant’s treatment plan. Physicians and families elected to limit intensive care in the delivery room in more than 90% of births when T13 or T18 was confirmed prenatally. Comparatively, in cases where the T13 or T18 was diagnosed after birth, more than 90% of infants initially received full intensive care in the delivery room.
www.nichd.nih.gov/research/science-advances/Pages/infant-care-trisomy1318.aspx

SOFT Support Organization for Trisomy 18, Trisomy 13 and Related Disorders
35 years of Support Resources
www.Trisomy.org 
Trisomy 13 LIFE - Patau Syndrome Family & Professional Support Group
FB Page       www.facebook.com/Trisomy13LIFE
FB Group     www.facebook.com/groups/Trisomy13

Patau Syndrome - Trisomy 13 - Our Children are not a Diagnosis: This experience of parents who continue their pregnancy after a prenatal diagnosis of Trisomy 13 or 18 - Full Publication

#PatauSyndrome #EdwardsSyndrome

Honored to call Barb Farlow a Friend, she's been an amazing advocate for Trisomy Families. You can reach Barb Farlow off the International Trisomy Alliance website. www.internationaltrisomyalliance.com

Article - Our Children are not a Diagnosis: This experience of parents who continue their pregnancy after a prenatal diagnosis of Trisomy 13 or 18  Click for full pediatrics aap publication
Jennifer Guon, Benjamin S. Wilfond, Barbara Farlow, Tracy Brazg, Annie Janvier

CLINICAL GUIDELINES AND IMPLICATIONS

Based on the information obtained in this study from parents who continued their pregnancy after a diagnosis of T13-18, we offer suggestions to assist healthcare providers to provide optimal prenatal care.
1. At the time of diagnosis, provide accurate survival figures. Avoid words like “lethal,” “incompatible with life” and “vegetable”. Avoid value-laden language related to disability.
2. Parents should be informed that most parents who chose to continue pregnancy have reported a positive and enriching experience regardless of the lifespan of their child.
3. Parents who decide to continue their pregnancy need support, not judgement or pressure to change their choice. Parents accept that early death is likely and they have chosen to value the time they have, both before and after birth.
4. Remember that to these parents, their child is a person, not a diagnosis. Refer to the unborn child by name, if possible. Parents expect to receive medical information related to their child, not to the diagnosis.Informing parents of normal organs in addition to anomalies is greatly appreciated. Offer hope when it is reasonable: hope that baby will continue to grow in utero, hope that baby will be born alive and that parents will enjoy some time with baby.
5. Offer to continue prenatal and fetal care as for any pregnancy. Ultrasounds are very special, memorable events and given the high risk of miscarriage, might be the only time parents will see their living baby. Taking a few minutes during the ultrasound to point out normal or “cute” features of the baby can be a lifetime gift to parents.
6. Guide parents to create a birth plan that is best for their child and family. Parents should understand that children with T13 or 18 are unique and some might benefit from life sustaining interventions while some may be harmed by them. Ensure that the birth plan includes collectables for memories such as foot prints and photographs. If indicated, be transparent with parents about any hospital protocol or policy that restricts certain interventions to babies born with T13-18. Parental challenges to these restrictions should be discussed in a multi-disciplinary meeting or ethics consultation.
7. Most parents who choose to continue pregnancy do so because it is the better path according to their personal beliefs. They appreciate empathy and kindness on their extraordinarily difficult journey, especially recognition of and respect for their love for their child."

The Experience of Families With Children With Trisomy 13 and 18 in Social Networks- Full Article

Article - The Experience of Families with Children with Trisomy 13 and 18 in Social Networks 

Annie Janvier, MD, PhD, 

Barbara Farlow, BEng, MBA, and 

Benjamin S. Wilfond, MD

CONCLUSIONS: Parents who engage with parental support groups may discover an alternative positive description about children with T13-18. Disagreements about interventions may be the result of different interpretations between families and providers about the experiences of disabled children and their quality of life.

                                

Trisomy 13 LIFE 2015 ♥ Families Transformed By Love

Trisomy13 LIFE ♥ Facebook GROUP
www.facebook.com/groups/Trisomy13/

Trisomy 13 LIFE Facebook PAGE
www.facebook.com/Trisomy13LIFE

"We believe each new life is a precious miracle
and encourage growing in love
to embrace life
from conception to natural death."

Trisomy13LIFE families, through their own grief and pain, reach out to help others on this very unique journey with Trisomy 13. All these families have lived and are living with a Trisomy 13 diagnosis and the reality of how it changes lives. With Courage, Grace, and Hope they continue on. Experiencing the transformation of grief into “Thanksgiving JOY.”

This Trisomy13 Life Support group is specific to Trisomy 13.

Given a poor prenatal or at birth diagnosis of Trisomy 13, these
Families are Transforming their Grief into Thanksgiving JOY.
Blessed each day by sharing their trisomy experience and connecting with others
who share their unique life journey.