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

2. Lethal diagnoses of genetic conditions established during the last year at VMC* 5 cases 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 diagnosis 1 Fragmented health care Perceived lack of concern for the baby 1. "My baby is a person": parents' experiences with life-threatening fetal diagnosis. Côté-Arsenault D, Denney-Koelsch E.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-care experiences of families given the prenatal diagnosis of trisomy 18.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 Prenatal diagnosis of multicystic dysplastic kidneys Intubation and prolonged CPR upon delivery

6. Sharing Information Amongst Providers: VMC approach Providing a brief summary of important cases Discuss complicated cases in multi- disciplinary conferences Introduce patients to Neonatology team

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 supports 3 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 Redlinger-Grosse K, Bernhardt BA, Berg K, Muenke M, Biesecker BB.

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 5 5 Affirming 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 Diagnosis of Severe IUGR and Dandy-Walker Malformation Coordinated counseling and care provided Compassionate care provided by NICU staff Mental Health Care Coordinated for Parents

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