Perinatal Care - Continuing your Pregnancy - Evidence Supports Trisomy Care

A MUST watch! Neonatologist Dr. Martin McCaffrey, medical adviser to the International Trisomy 13/18 Alliance, speaks about his personal journey caring for newborns with T13/18 and how the evidence supports that doctors MUST change the way they care for these children. Please share with your networks, friends and medical providers.

Be sure to VIEW the Trisomy 13 LIFE facebook groups collage's sharing
Trisomy 13 Life Expectancy Trisomy 13 LIFE Blogspot

The Living with Trisomy 13 Community shares family experiences
and families offer support to each other since 2005
www.livingwithtrisomy13.org 

Families and Professionals are encouraged to register with SOFT www.trisomy.org

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."