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

Denise Côté-Arsenault, PhD, RNC, FNAPUniversity of North Carolina at Greensboro

Erin M. Denney-Koelsch, MDUniversity of Rochester Medical Center

BackgroundPrenatal testing is now routinely doneUltrasounds done at 12-20 weeks2% of pregnancies have life-threatening fetal

diagnosis20-85% of women choose to continue pregnancy

(wide range in studies).Perinatal palliative care services are scarceCounseling re options is done by Obstetrics,

Neonatology, Genetic Counselors Long-term follow up is not common

Previous ResearchMost existing studies are retrospectivePerinatal 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

Purpose of the StudyTo 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

Study MethodsQualitative descriptive pilot studyRecruit women, and their willing partnersThrough 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 pregnancyBeing seen by Pall Care was not a requirement for

inclusion.Semi-structured interviews One interview, during pregnancy or after birth

Data Collection & Analysis: Interviews

Informed consent obtainedAudio-recordedEncourage personal story-tellingQualitative analysis

Comprehending, synthesizing, theorizing (Morse & Field, 1995)

Each researcher independently pulls out important themes and quotes

Interview GuideSemi-structuredQuestion 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?”

Sample5 families interviewed

Prenatally: 2 couples, 2 mothersPostnatally: 1 couple

DemographicsAll were Caucasian except one mother mixed Asian All had at least HS education, half had graduate

education3 were first pregnancies1 had history of 1 termination and one miscarriage1 had history of 1 miscarriage and 1 living childFetal diagnoses: trisomy 18, renal agenesis, hypoplastic

left heart

Results: Overall ImpressionParents, in spite of their grief, demonstrated love

for their baby and determination to find meaning in and honor their baby’s life.

Dimensions & Themes

Personal Pregnancy Experience

Interactions with Others

• Grieving Multiple Losses• Arrested Parenting• “My Baby is a Person”

• Fragmented Health Care• Disconnected Family and Friends

• Utterly Alone

Grieving Multiple LossesMultiple losses of:

Perfect babyNormal pregnancy

experiencesFuture parenting

Grief reactions:DisbeliefSadnessDenialAngerGuilt

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.’”

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.”

Arrested ParentingNormal pregnancy is a process of becoming a

parent for the childA lethal diagnosis halts this processFather 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.”

Arrested ParentingAnother 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.”

My Baby is a PersonImportance of their baby being thought of and treated

as a real personDid not want people to pretend he/she didn’t existWanted to find ways to legitimize and honor the baby’s

life. Not all pregnancies were desired but all babies

became wanted

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.”

My Baby is a PersonImportance 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.”

Dimensions & Themes

Personal Pregnancy Experience

Interactions with Others

• Grieving Multiple Losses• Arrested Parenting• “My Baby is a Person”

• Fragmented Health Care• Disconnected Family and Friends

• Utterly Alone

Fragmented Interactions with Care Providers

Ultrasounds & other testing very disjointed & difficultMany visits before there was any certainty -> lots of

waiting Many examples of vague, unclear information, in an

effort to spare the family bad newsFamilies left “ in limbo”Need for hope

Fragmented Interactions with Care ProvidersToo medicalNot 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.”

Fragmented Interactions with Care ProvidersPalliative 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”

Disconnected Family and FriendsSome 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.”

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.”

Utterly AloneFamilies described being “stuck on an island”“Deserted” by providers“So isolated”“In limbo”

ConclusionsFamilies 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.

Implications for CareIdeal 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 ServicesContinuity of Care

Begin in at the time of diagnosis and follow to birth, death and beyond.

Birth Plans, Standard Order Sets, Hospice Room

Future ResearchLongitudinal studyFrom diagnosis to deathLearn from the parents what they are going through,

at each stageLearn from the parents what they needSeparate interviews with fathers

AcknowledgementsDavid Korones, MDEva Pressman, MDIrene Cherrick, MDCarol Dawson, RN, PNPLoralei Thornberg, MDPatricia Chess, MDCarl D’Angio, MDRonnie Guillet, MD

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PublicationCôté-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.