Background
Methods
Aim
Design and setting
Population and participants
Participant | Nationality | Education | Employment | Time of death | Baby’s age | Time since death of baby | Place of interview |
---|---|---|---|---|---|---|---|
P-1 | Colombian | Secondary | Employed | Intrapartum | 40 weeks | 12 months | Health Centre |
P-2 | Colombian | Secondary | Unemployed | Antepartum | 30 weeks | 36 months | Health Centre |
P-3 | Spanish | Secondary | Employed | Intrapartum | 24 weeks | 48 months | Health Centre |
P-4 | Spanish | University | Employed | Intrapartum | 24 weeks | 48 months | Health Centre |
P-5 | Spanish | Secondary | Employed | Antepartum | 34 weeks | 60 months | Health Centre |
P-6 | Spanish | University | Employed | Postpartum | 6 days | 5 months | Health Centre |
P-7 | Spanish | University | Employed | Postpartum | 6 days | 5 months | Health Centre |
P-8 | Spanish | Primary | Employed | Postpartum | 3 days | 18 months | Home |
P-9 | Spanish | Primary | Employed | Postpartum | 3 days | 18 months | Home |
P-10 | Ecuadorian | Secondary | Unemployed | Antepartum | 28 weeks | 24 months | Health Centre |
P-11 | Spanish | Primary | Employed | Antepartum | 40 weeks | 18 months | Home |
P-12 | Spanish | Primary | Unemployed | Antepartum | 40 weeks | 18 months | Home |
P-13 | Spanish | Secondary | Employed | Intrapartum | 24 weeks | 30 months | Health Centre |
P-14 | Spanish | University | Employed | Antepartum | 36 weeks | 6 months | Health Centre |
P-15 | Spanish | Primary | Employed | Antepartum | 34 weeks | 24 months | Health Centre |
P-16 | Spanish | Secondary | Unemployed | Antepartum | 38 weeks | 36 months | Home |
P-17 | Spanish | Primary | Employed | Antepartum | 38 weeks | 36 months | Home |
P-18 | Spanish | Primary | Employed | Antepartum | 37 weeks | 3 months | Hospital |
P-19 | Spanish | Secondary | Employed | Antepartum | 37 weeks | 3 months | Hospital |
P-20 | Spanish | Secondary | Employed | Antepartum | 38 weeks | 36 months | Health Centre |
P-21 | Spanish | University | Employed | Antepartum | 25 weeks | 15 months | Hospital |
Data collection
Data analysis
Rigour
Results
Theme | Subtheme | Units of meaning |
---|---|---|
Perceiving the threat and anticipating the death: “Something is wrong with my pregnancy” | “This could end badly.” Medical history as a threat and a source of uncertainty | Medical history, infertility treatment, high-risk pregnancy, repeated miscarriage, vulnerability of the pregnancy, frequenting emergency services, suspicion |
Anticipating the death. From suspicion to confirmation | Warning signs, having a hunch, lack of movement, decreased movement, contractions, pain, worry, fear, helplessness | |
Emotional outpouring: the shock of losing a baby and the pain of giving birth to a stillborn baby | Emotional shock upon notification of the baby’s death | Notification, non-verbal language, silence, serious expression, scarce explanation, hopelessness, disbelief, anguish, anger, emptiness, insurmountable pain. |
Giving birth to a stillborn baby: a doubly painful labour process for families | Caesarean, inducing labour, vaginal birth, extra suffering, not seeing the stillborn baby, anger about disregard from professionals, reassuring, professionalism | |
Loneliness and lack of information as aggravating factors in the pain of the loss | Receiving the news alone, lack of information, unclear diagnosis, knowing the reason, demanding information, alleviating the pain, overcoming feelings of guilt | |
“We have had a baby.” The need to give the baby an identity and legitimacy to the grief | Saying goodbye to the deceased baby, having the baby’s footprint, keeping the memory of the baby alive | Seeing the deceased baby, embracing the baby, having photographs, keeping a footprint, saying final goodbyes, need for identification, need for recognition as a part of the family |
Mourning rituals. The importance of respecting individual beliefs | Baptism, cremation, burial, spiritual suffering, non-recognition, refusing baptism, keeping the ashes, having a meaningful place to visit the deceased, remembering the experience. | |
Bureaucracy and administrative language as obstacles in the mourning process. | Administrative slowness, misinformation about administrative processes, inappropriate language, referring to the baby as a foetus, denying registry, denial of the existence, identification as a deceased baby. |
Theme 1. Perceiving the threat and anticipating the death: “Something is wrong with my pregnancy”
“… I was worried, I got the feeling that I was exaggerating it too much (…), but then I started to assimilate the fact that it would end badly” (P-10).
“It could end badly”. Medical history as a threat and a source of uncertainty
“I had been trying to have children for six years straight. My husband and I would get up at 2:00 a.m. for the treatments, (…) it was very stressful and I felt physical and psychological fatigue. After that, you’re always worried that something’s not right” (P-5)
“The doctors diagnosed me with a high-risk pregnancy (…). I had to get an ultrasound every month, but on top of that, I often went to the hospital, for aches, pains, bleeding (…). I was afraid something would happen” (P-12).
Anticipating the death. From suspicion to confirmation
“(…) it had been a few days since I had felt any movements (…). Since I already had an appointment for foetal monitoring, I didn’t want to go to the emergency room in case I was overreacting, I didn’t want to bother them although I was really worried” (P-14).
“The cramps that I felt (…) weren’t periodic or regular. I had some cramping, later a little more, then they told me that I had been dilating and my cervix had effaced (…) At that point, there was choice but to go ahead, and that made it even harder, if that’s even possible” (P-13).
Theme 2. Emotional outpouring: the shock of a baby’s death and the pain of giving birth to a stillborn baby
“You feel terrible, devastated, you go in there thinking you’re going to be a father, and suddenly your baby is dead” (P-11).
Emotional shock upon notification of the baby’s death
“ The doctors told me that the next few hours were really important in his development (…) they called us on the phone, and of course, my heart started racing. They told us to come quickly because the baby was worse (…), your world falls apart, and you lose all hope” (P-10).
“I didn’t know what to do, where to go, if I should just run away, hit something, scream, or do something. You are just stuck there in shock (…) you feel such intense pain yet emptiness at the same time (…) God! You can’t begin to imagine what it feels like”. (P-11).
“I think the gynaecologist should have waited until my husband was there and have given us the news in a different way, but she started to check me with the sonogram, she looked at me and said: ‘No, I’m sorry, she doesn’t have any vital signs, she’s dead.’ Just like that “ (P-2).
“The gynaecologist made a strange face, and I said, “Something’s wrong, isn’t it? (…) Please tell me everything’s ok.” She didn’t say anything, but her face said it all.” (P-6).
“I could tell they were not saying anything to me during the ultrasound, then they called the other doctor in, and I got really nervous. And when I saw their faces, I asked, “What is it, is he dead?” because they weren’t telling me anything” (P-2).
Giving birth to a stillborn baby: a doubly painful labour process for parents
“I didn’t want to see my son born dead, … it broke my heart (…) My wife and I thought that it would just draw out the situation and create unnecessary suffering” (P-18).
“(...) The pain was unbearable. I had called several times, and no one came until I finally went out into the hallway and yelled to get the midwife. The nurse’s aide told me that he was busy, and I responded angrily: “I don’t care where he is, but where he should be is in this room with my wife!”. (P-21).
“I was impressed by the delivery room midwife, … the warmth with which she treated my wife. She let me stay with her, she held her hand and spoke to her gently … at such a hard time, that sort of personal treatment was comforting, and even today we still remember it as the most positive thing about that sad experience”. (P-21).
Loneliness and lack of information as aggravating factors in the pain of the loss
“Getting the news without having my husband there, you feel helpless and alone, (…) think about if someone told you something like that without anyone there, even to put their hand on your shoulder to console you, it’s shocking, right? It’s just wrong”. (P-12).
“(…) I wasn’t in the mood to be there, in the same room where you can hear newborn babies in their cribs, and bottle carts go by, it was frustrating.” (P-3).
“They should tell you things as they really are [with emphasis]. (…) But no, instead they tell me that my baby was born tired (…) [Pause]. This is the story the paediatricians told me, that my child was born tired. How can you say that, in that way?” (P-1).
“On top of that, they make you wait months to get the autopsy back, and waiting such a long time with that same anguish and uncertainty doesn’t let you really live or move on.” (P-6).
“He told me, “Everything was fine.” And I said, “What do you mean, everything was fine?” (…) That’s the explanation I was given (…) Can you believe that? All I wanted to know was the reason why and that I wasn’t to blame.” (P-14).“I had been waiting for that appointment with the gynaecologist for such a long time..., to continue without answers. It would have helped me to understand why that had happened to me” (P-15).
Theme 3. “We have had a baby”: the need to give the baby an identity and legitimise grief
Saying goodbye to the deceased baby, having the baby’s footprint, keeping the memory of the baby alive
“We appreciate the fact that we were allowed to be with him, see him, touch him (…) it was very hard, but we had to say our last goodbyes because even though he wasn’t born alive, he was still our son, and he would be forever.” (P-11).“There are people that think that me having pictures of my son on my phone is gruesome. I don’t sit there looking at the photo all day, but if I need to, I know I can look at it, and that helps” (P-5).
“My daughter was beautiful and (…) they wrapped her up and took her away immediately, they didn’t let me see her or hold her at all (…) and I told them, “Wait!” and they didn’t wait. They told me it wasn’t good for me to spend a long time with her.” (P-17).
Mourning rituals. The importance of respecting individual beliefs
“Couldn’t they have offered us the possibility of baptising her?...What fault did the baby have that she had left this world so soon, so little? The priest told us that we couldn’t have a mass for her, it’s not fair that he wouldn’t do anything for her, because she was and will continue to be my child.” (P-4).
“I picked up the ashes, and that was it, and he’s with me. In the summer, I go to a different house, and I take my puppies and my son’s ashes (...) it’s just something that I need (…) to know that he’s there.” (P-19).“Every week or fortnight, I go up to the cemetery, nobody can take away those five minutes I have with her. (…) Being able to go up there and be with my daughter puts my mind at ease.” (P- 8).
“That (stillbirth) was a painful experience, and I don’t need to have the remains of my baby to remember her. I remember the experience, but the baby no, because I didn’t get to meet her, they didn’t give us her body. My wife thinks about that more than I do, but neither of us wishes we had had a ceremony or had kept her remains” (P-21).
Bureaucracy and administrative language as obstacles in the mourning process
“They should tell you what to do when your baby died, that you have to go to the funeral parlour, what papers they’re going to ask you for. They should direct you and guide you … “ (P-6).
“There were a few things that we didn’t like … for example, (in the report) it said ‘foetus’. That was pretty painful. No, for us, it’s not a foetus (…) it’s our baby” (P- 20).
“Since he wasn’t alive for one minute, neither his birth nor death could be registered, and I just broke down. When I went to the registry, I started crying (…) it’s as if my son didn’t exist” (P-17).