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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.