Continuing the Pregnancy

Bill CampbellLicensed Genetic CounselorSanta Clara Valley Medical CenterBill.Campbell@hhs.sccgov.org

Preparing and caring for families facing a lethal prenatal diagnosis

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

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.

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

A case study in the difficulties of communicating between teams

Sharing Information Amongst Providers: VMC approach

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

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

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 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.

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.

A Success Story

Contact InfoBill CampbellLicensed Genetic CounselorSanta Clara Valley Medical CenterBill.Campbell@hhs.sccgov.org(408) 885-3041