“ My Baby is a Person”: Parents’ Experiences with Life-Threatening Fetal Diagnosis

1. “My Baby is a Person”: Parents’ Experiences with Life-Threatening Fetal Diagnosis Denise Côté-Arsenault, PhD, RNC, FNAP University of North Carolina at Greensboro Erin M. Denney-Koelsch, MD University of Rochester Medical Center

2. Background • Prenatal testing is now routinely done • Ultrasounds done at 12-20 weeks • 2% of pregnancies have life-threatening fetal diagnosis • 20-85% of women choose to continue pregnancy (wide range in studies). • Perinatal palliative care services are scarce • Counseling re options is done by Obstetrics, Neonatology, Genetic Counselors • Long-term follow up is not common

3. Previous Research • Most existing studies are retrospective • Perinatal loss often leads to emotional distress, intense grief, and PTSD • British studies: parents need time to make a decision; grieving may be easier if they continue pregnancy • Prospective US study: parents often find personal growth under these circumstances (Black & Sandelowski, 2010) • Prospective studies are limited to specific diagnosis with varying prognosis

4. Purpose of the Study • To explore the parental experience of continuing pregnancy with a known lethal fetal diagnosis • To learn the parental perspective of perinatal palliative care services when they were offered or received • To demonstrate the feasibility and acceptability of research participation of couples

5. Study Methods • Qualitative descriptive pilot study • Recruit women, and their willing partners • Through Palliative care consultants with Prenatal PC consultation requested by obstetrics. • Inclusion criteria: • Pregnancy with fetal diagnosis and prognosis of < 2 mo. • Family has decided to continue pregnancy • Being seen by Pall Care was not a requirement for inclusion. • Semi-structured interviews • One interview, during pregnancy or after birth

6. Data Collection & Analysis: Interviews • Informed consent obtained • Audio-recorded • Encourage personal story-telling • Qualitative analysis • Comprehending, synthesizing, theorizing (Morse & Field, 1995) • Each researcher independently pulls out important themes and quotes

7. Interview Guide • Semi-structured • Question Examples: • “Please tell me about this pregnancy, from the beginning.” • “How have other people reacted to the baby’s diagnosis?” • “What could the doctors and nurses provide you right now that would be helpful?” • “What has it been like to talk to the palliative care team?”

8. Sample • 5 families interviewed • Prenatally: 2 couples, 2 mothers • Postnatally: 1 couple • Demographics • All were Caucasian except one mother mixed Asian • All had at least HS education, half had graduate education • 3 were first pregnancies • 1 had history of 1 termination and one miscarriage • 1 had history of 1 miscarriage and 1 living child • Fetal diagnoses: trisomy 18, renal agenesis, hypoplastic left heart

9. Results: Overall Impression Parents, in spite of their grief, demonstrated love for their baby and determination to find meaning in and honor their baby’s life.

10. Dimensions & Themes Personal Pregnancy Experience Interactions with Others • Fragmented • Health Care • Disconnected • Family and • Friends • Grieving • Multiple • Losses • Arrested • Parenting • “My Baby • is a Person” • Utterly Alone

11. Grieving Multiple Losses • Multiple losses of: • Perfect baby • Normal pregnancy experiences • Future parenting • Grief reactions: • Disbelief • Sadness • Denial • Anger • Guilt

12. Grieving Multiple Losses “I guess I’ve been getting depressed lately just thinking about it because I can feel him and everything and I can see him in the pictures.” “I don’t get to plan a nursery, I get to plan a funeral.” “We’re going to have to spend over half of our pregnancy knowing that this baby isn’t going to live once he’s born.” “..kept asking ‘am I doing something wrong? Am I not drinking enough water? Is this my fault? This has got to be because of something that I did.’”

13. Grieving Multiple Losses “We were really hopeful that there was a mistake. We were like maybe it’ll go away by next time…I was really confident that there wasn’t really going to be any problems.” “I kept thinking they put me on bedrest..and everything was going to be fine.” “I’ll just randomly get mad because of the situation. I know people mean well when they say to relax and stay calm. I just get mad at them ‘cause I don’t see how you can be relaxed and be calm in this situation.”

14. Arrested Parenting • Normal pregnancy is a process of becoming a parent for the child • A lethal diagnosis halts this process • Father had been decorating the nursery. Mother said, “It was really, really pretty. But then, when we found out, we just stopped. So the room is like, the paneling’s done around like boom-boom, and then just…stopped. We just stopped. And we don’t go in the room.”

15. Arrested Parenting • Another dad said, “In some ways I wanted it to be over, but we know what that would mean.” “My thing was to put up walls. Not being the one to carry the baby” • Funeral planning was very important to one family. “We’ve given him everything we could, as parents.” “Everything that a mom gets to do, I can’t do. I get to plan a funeral. It’s all I can give him.”

16. My Baby is a Person • Importance of their baby being thought of and treated as a real person • Did not want people to pretend he/she didn’t exist • Wanted to find ways to legitimize and honor the baby’s life. • Not all pregnancies were desired but all babies became wanted

17. My Baby is a Person • “I really do want a memory of my baby. Regardless if he’s alive, or you know…he’s still my baby.” • “Treat us normally. This is our baby and we want to enjoy the pregnancy and our time with her, and enjoy what we have.” • “Don’t act as if she isn’t there.”

18. My Baby is a Person • Importance of a name. • All the families had named their child. • One family struggled with not knowing the gender due to difficulty with the ultrasound views. “It’s a person. Important to have a name.” “He’s part of our family” • Dad said, “Legitimize his life.”

19. Dimensions & Themes Personal Pregnancy Experience Interactions with Others • Fragmented • Health Care • Disconnected • Family and • Friends • Grieving • Multiple • Losses • Arrested • Parenting • “My Baby • is a Person” • Utterly Alone

20. Fragmented Interactions with Care Providers • Ultrasounds & other testing very disjointed & difficult • Many visits before there was any certainty -> lots of waiting • Many examples of vague, unclear information, in an effort to spare the family bad news • Families left “ in limbo” • Need for hope

21. Fragmented Interactions with Care Providers • Too medical • Not always done with compassion “It’s hard for doctors. Their focus is on what needs to be done, what’s wrong and how do we fix it, but there’s so much more history with the parents behind that.” “I need to have hope. I know what the reality is, but I still need the little bit of hope.” “It would help if doctor’s could seem like there is more hope; they don’t really talk positively. I wouldn’t be so depressed if they saw a little more hope, or showed it, not even believing it.”

22. Fragmented Interactions with Care Providers • Palliative care consultations helped most: “It was helpful learning what we could do: photos, how we can prepare, option to take her home as soon as possible.” “They made me feel like they would take care of her like I would take care of her as a parent, not as they would take care of her as a doctor (crying), that was the most important part to me.” “Their focus was different.” • Helped by “being there for us on the emotional side.” • Learning about “Now I Lay Me Down to Sleep”

23. Disconnected Family and Friends • Some extended families expected a miracle, leaving the grieving parents to try to explain why that wasn’t possible. “[My sister] was like maybe there will be a miracle. And I’m thinking, this isn’t Charlie Brown special.” • Awkward interactions with peers • No one really understood what they were going through “I think she’s trying too hard to be [helpful], which is making her not helpful at all.”

24. Disconnected Family & Friends • One couple described going to a party with another pregnant woman there: “We were the white elephant in the room…It was the first time I realized how differently we were going to be treated.” “Some people say I know how you feel or I know what you’re going through, but you really don’t. I understand if you’ve lost a child, but maybe not a baby when he’s born.” “At a certain point, I don’t want to hear everybody’s sob story because I just want to deal with my own.”

25. Utterly Alone • Families described being “stuck on an island” • “Deserted” by providers • “So isolated” • “In limbo”

26. Conclusions • Families want clear, timely information, presented with compassion. • They don’t want false hope but need to maintain some hope. • They want to legitimize and honor the humanity of their child. • They want to feel like they are not alone. • They need to feel that they are still parents.

27. Implications for Care • Ideal Model would include Multidisciplinary Perinatal Care • “Perinatal Support Continuity Clinic” • Docs: Obstetricians, Palliative Care Specialists, Neonatologists, Pediatric/Ob Subspecialists (Genetics, Cardiology, Developmental Peds, etc.) • Ob and NICU Nurses, SW, Chaplains, Ethics, Art/Music therapy • Bereavement Services • Continuity of Care • Begin in at the time of diagnosis and follow to birth, death and beyond. • Birth Plans, Standard Order Sets, Hospice Room

28. Future Research • Longitudinal study • From diagnosis to death • Learn from the parents what they are going through, at each stage • Learn from the parents what they need • Separate interviews with fathers

29. Acknowledgements • David Korones, MD • Eva Pressman, MD • Irene Cherrick, MD • Carol Dawson, RN, PNP • LoraleiThornberg, MD • Patricia Chess, MD • Carl D’Angio, MD • Ronnie Guillet, MD

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31. Publication • Côté-Arsenault, D and Denney-Koelsch, E.. (2011). “My Baby is a Person:” Family Experiences with Life-threatening Fetal Diagnosis. Journal of Palliative Medicine. Volume 14 (12): 1302-1308.