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Continuing the Pregnancy

Continuing the Pregnancy. Preparing and caring for families facing a lethal prenatal diagnosis. Bill Campbell Licensed Genetic Counselor Santa Clara Valley Medical Center Bill.Campbell@hhs.sccgov.org. Lethal d iagnoses of genetic conditions established during the last year at VMC*.

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Continuing the Pregnancy

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  1. Continuing the Pregnancy Preparing and caring for families facing a lethal prenatal diagnosis Bill Campbell Licensed Genetic Counselor Santa Clara Valley Medical Center Bill.Campbell@hhs.sccgov.org

  2. Lethal diagnoses of genetic conditions established during the last year at VMC* • 5cases of prenatally known lethal diagnoses • 4 of these families continued the pregnancy • 1 child with trisomy 18 is still alive at 11 months of age • *= EDD between 10/31/11 and 10/31/12

  3. Common experiences of families with a prenatal lethal diagnosis1 1. "My baby is a person": parents' experiences with life-threatening fetal diagnosis. Côté-Arsenault D, Denney-Koelsch E.J Palliat Med. 2011 Dec;14(12):1302-8. Epub 2011 Nov 11.

  4. Fragmented Health Care “I lost contact with my regular health care provider, so we got shuttled into a little subsystem. It’s like, ‘Something’s wrong, so you don’t go to us anymore, you go to these new people.’” – Mother of fetus diagnosed with trisomy 18 Lack of continuity of care, in one study, was tightly correlated with patient satisfaction (P<.004)2 • 2 The health-careexperiences of families given the prenatal diagnosis of trisomy18.Walker LV, Miller VJ, Dalton VK. J Perinatol. 2008 Jan;28(1):12-9. Epub 2007 Oct 25

  5. A case study in the difficulties of communicating between teams

  6. Sharing Information Amongst Providers: VMC approach

  7. Delivering the news to parents Deliver news in a clear and sensitive way, without time pressure Provide all the options to the parents Assess parental supports, including cultural and religious supports3 3. The decision to continue: the experiences and needs of parents who receive a prenatal diagnosis of holoprosencephaly Redlinger-Grosse K, Bernhardt BA, Berg K, Muenke M, Biesecker BB..Am J Med Genet. 2002 Nov 1;112(4):369-78

  8. Affirming parenthood “Treat us normally. This is our baby and we want to enjoy the pregnancy and our time with her. Don’t act as if she isn’t there. ” “It’s a person; it’s important to have a name. He’s part of our family” 4 • 4 . "My baby is a person": parents' experiences with life-threatening fetal diagnosis. Côté-Arsenault D, Denney-Koelsch E. J Palliat Med. 2011 Dec;14(12):1302-8. Epub 2011 Nov 11

  9. Creating memories after birth • When perinatal loss is experienced, time to create a bond between baby and the family is often brief. • Mementos of the lost family member are often the only tangible image that young siblings have. • “Anything tangible you can get your hands on is so important. The one thing you want is already gone, and... you’ve got to have that piece of something for comfort”5 • 5Affirming motherhood: validation and invalidation in women's perinatal hospice narratives. Lathrop A, Vandaveuse L.Birth. 2011 Sep;38(3):256-65. doi: 10.1111/j.1523-536X.2011.00478.x. Epub 2011 May 20.

  10. VMC’s plans for improving care • MICC, L & D, and NICU each have perinatal bereavement policies in place. • However, many critical staff have no formal training in bereavement care. • In September 2012, six staff members were trained to train other staff in bereavement care. • We hope to improve training throughout the hospital.

  11. A Success Story

  12. Contact Info Bill Campbell Licensed Genetic Counselor Santa Clara Valley Medical Center Bill.Campbell@hhs.sccgov.org (408) 885-3041

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