Parenthood after severely endangered pregnancy and delivery of a prematurely born child: An interview study with fathers and mothers

Figures & data

Table 1. Background characteristics of mothers (N = 5) and infants (N = 5)

	Name and sex child	Age mother years	GA infant at birth	Birth weight Categories VLBW/ ELBW	LOS mother before delivery	LOS mother after delivery	LOS NICU Infant
Case 1* Jill & Peter	Stella, girl	34	32wks; 2d	VLBW	13 days	6 days	18 days
Case 2** Mary & Joe	Morris, boy	34	30wks; 6d	VLBW	8 days	2 days	9 days
Case 3** Rose & Mark	Jesse, boy	22	28wks; 6d	ELBW	3 days	4 days	23 days
Case 4* Esther & Carl	Nora, girl	31	31wks; 5d	VLBW	25 days	4 days	6 days
Case 5* Katie & Bob	Jacky, girl	31	28wks; 0d	VLBW	2 days	5 days	46 days

Note: GA= gestational age in weeks and days, NICU= Neonatal Intensive Care Unit, VLBW= very low birth weight (1000–1500 grams), ELBW= extremely low birth weight (less than 1000 grams), LOS= length of hospital stay, *= delivery induced due to the mother’s critical medical condition, **= delivery induced due to the fetus’ critical medical condition

Table 2. Themes and subthemes identified in the interviews, organized according the “Parenthood Constellation” and the “Traumatic experiences” theme

1. Life and Growth Theme: am I able to keep my baby alive?	1.1 Troubled pregnancy and delivery: a dreadful adventure • Experiences of pregnancy and delivery • Medical situation of mother and child
	1.2 Troubles about viability: how will my child survive? • Fear of losing the child • Health of the child • Feeling guilty and helpless
	1.3 Concerns about the child’s future: will my child succeed and be happy in life? • Worries concerning development • Hope
2. Primary Relatedness Theme: shall I love my child and will my child love me?	2.1 Caring and parenting: can I be a parent to my child and do the things parents do? • Considering the particular needs of the child • Feeling (in)adequate
	2.2 Connectedness: is this my child? • Separations in the hospital • Alienation • Developing relationship
	2.3 Perceiving their preterm baby: who is my child? • First encounter with a prematurely born child • Comparing to full-term born children
3. Supporting Matrix Theme: can someone help me parenting my child?	3.1 Relationship with partner • Being separated from partner • Feeling supported by partner •Medical situation and fear of losing the partner
	3.2 Healthcare professionals • Experiencing support/trust • Experiencing stress/mistrust
	3.3 Grandparents: supportive but also burdened • Experiencing support • Felt burden of grandparents
	3.4 Peers • Peers
4. Identity Reorganization Theme: can I pick up my life and integrate parenthood in it?	4.1 Making room for the baby: preparing the arrival • Preparing for the arrival of child
	4.2 Transition into parenthood • Parenting role • Professional activity • Rehabilitation of medical situation
	4.3 Family Planning: future children • Family planning of future children
5. Traumatic experiences	• Moments of loss of control • Recurring memories • Catastrophic fears about what might happen

Table

Experiences of pregnancy and delivery

Jill (case 1): “The gynecologist told me to push. “She needs to come out because her heartbeat is dropping!” I panicked and thought I have to do something to get her out.”

Medical situation of mother and child

Rose (case 3): “I arrived at the hospital, and they put me on the monitor and then all was wrong. My blood pressure kept going higher and higher and I panicked.” Esther (case 4): “(crying) That was a very difficult moment. They (the doctors) told me that I was very ill and was about to have another seizure. At that moment, I was in so much pain and I felt so sick that I said: it does not matter what they do, but the baby really needs to come out, because I am not going to survive.”

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Fear of losing the child	Bob (case 5): “The image of entering the church with a little coffin has often crossed my mind. The fear remains that something bad happens”. Carl (case 4) about when his daughter stopped breathing: “When Nora was finally home. the first evening, she stopped breathing. She was taken to the hospital by trauma helicopter … since then I am even more worried.”
Health of the child	Peter (case 1) mentioned worries about the fragile health of his daughter as she attends daycare, 6 months after birth: “If she has a cold for a week and loses a lot of weight so fast … I just hope the cold goes away as soon as possible.”
Feeling guilty and helpless	Esther (case 4): “A lot of guilt ran through me. Am I the reason she had to be born so prematurely?” Mark (case 3) said: “You just feel helpless, there is nothing you can do except wait for him to grow and become stronger.”

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Worries concerning development	Carl (case 4): “I am very anxious that she will develop a conduct disorder and that she will have trouble adjusting to school or work situations.”
Hope	Katie (case 5): “I wish that she may at least be very happy and healthy, and if she ever wants to have children that she will not have to experience the same as I did when she was born.”

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Considering the particular needs of the child	Esther (case 4): “When your baby is born very small, it needs breast milk because of all the substances it contains. So the choice was actually quite easy for me. It was the only logical option”.
Feeling (in)adequate	Mark (case 3): “When I see that he is in pain and that he cannot be silenced, … that is a kind of being powerless.”

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Separations in the hospital	Rose (case 3): “When you are in hospital and you can only be once a day with him … and then when you come home and your kid is not with you … that was very difficult for me to endure.” Bob (case 5): “When I had to leave Jacky in the hospital, it felt like I abandoned my child who was in need … it was as if I was not interested in her.”
Alienation	Peter (case 1): “Your child is a patient and not yet 100% ‘your child’. She was more of a kind of a patient than completely my baby I could take care of.”
Developing relationship	Esther (case 4), about discharge: “That was really the moment that I felt: now she is mine, ours. In the hospital I was just one of the caregivers. It was difficult for me to love her 100%. Officially you are the mother, but in practice you are one of the many that take care of her.”

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First encounter with a prematurely born child	Jill (case 1): “Such a little bugger”. Mary (case 2): “Really a very small doll. I have always assumed that it would be a healthy child (…) I do not know if I want a disabled child”. Carl (case 4): “It was such a small and delicate creature.” Bob (case 5): “It looked sort of like a kid.”
Comparing to full-term born children	Carl (case 4): “She is a fighter, does everything quicker than other babies … it is as if she wants to recover her setbacks.”

Table

Being separated from partner	Katie (case 5): “After the delivery I hated it when Bob left. Even though he was actually next to the hospital in the Ronald McDonald house. I hated to be alone.” Peter (case 1): “One of those moments in your life that you won’t forget: the moment we were taken to the ward room and someone entered the room and asked what she wanted to eat… I thought, shit, Jill has to stay here, and I cannot stay… that was really tough…”
Feeling supported by partner	Mark (case 3) about the importance of supporting each other: “One has to rely on the doctors and nurses … but fortunately we were able to talk to each other and then we could handle it better.”
Medical situation and fear of losing the partner	Joe (case 2): “I was really worried about her health … failure of your organs, that is not to be taken lightly. I am glad that we live now, because 50 years ago, I wouldn’t have had a wife or child anymore. This is the kind of thoughts that are going through your mind … these are kind of nightmares to me.”

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Experiencing support/trust

Peter (case 1): “I completely trusted the nurses and doctors that were helping my wife, even when they explained that it was a matter of choosing either in favor of the health of the mother or the baby. It was helpful that they were honest.” Bob (case 5): “When Jacky started playing with toys, we were unsure about how to react. We learned that – as a preterm born baby – she couldn’t handle too many stimuli. So we were hesitant about giving her toys. It was helpful that the physiotherapist reassured us that she could play with the toys and this wouldn’t harm her.”

Experiencing stress/mistrust

Katie (case 5): “The night that I had shortness of breath, a nurse came and just said: Oh, take it easy …. I didn’t feel comfortable at that time. I doubted if she understood how serious it was, she didn’t call a doctor. I was very short of breath … that is a very … anxious feeling.”

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Experiencing support	Jill (case 1): “We were very lucky with my mother, that she was available for us. She managed our household while I was in the hospital.”
Felt burden of grandparents	Rose (case 3): “I noticed that my mother did not dare to get attached to Jesse when he was born. She was anxious that he would not survive. My father, on the other hand, had the attitude of giving Jesse as much love as he could give as long as Jesse was alive”.

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Peers

Jill (case 1): “At the NICU, horrible things happened to other children. Talking to those parents helped us to keep our story in perspective, to exchange information and to compare situations.” Mary (case 2): “It was a relief to hear the stories of other parents and have fun with them.”

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Preparing for the arrival of child

Joe (case 2): “At the time my wife was hospitalized, we were moving. So that was a lot of stress for me: painting, preparing the baby room, doing jobs around the house and being with my wife in the hospital.” Rose (case 3): “It feels like I was pregnant for only 8 to 10 weeks, that is really weird.”

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Parenting role	Esther (case 4): “It is beautiful to be a mother, but it is also negative, because you change as a person. It makes me emotional (cries). It frightens me to be a mother.”
Professional activity	Katie (case 5): “I felt so relieved when I did not have to go back to work because the contract was not renewed. I could finally do what I had been supposed to do during maternity leave … enjoy being with my baby.” Esther (case 4): “My work is very intensive, and I always have to perform at the top of my ability, and I cannot do that at all … that just isn’t possible … When I think about the fact that I should do that again in the future, I really panic.”
Rehabilitation of medical situation	Rose (case 3): “You just do not trust your body anymore.”

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Family planning of future children

Rose (case 3): “I always said I wanted a few kids in a row. But now I feel completely different. I have been so ill and I lost so much strength … I could have died. I feel responsible now I am a mother. I do not want to leave my husband and son behind, by dying of preeclampsia.”

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Moments of loss of control	Bob (case 5): “The medical condition of my pregnant wife worsened. The two most important people in my life … it was devastating… I didn’t know what to do with my feelings … it was such a hard time”.
Recurring memories	Carl (case 4): “My parents tell me that I’ve changed. I am brusque and irritable. Late at night I am often thinking about what happened. I haven’t processed it all yet.” Rose (case 3): “I try to avoid thinking about the preeclampsia and preterm birth. My emotions are at the surface. If I admit the feelings, I will not be able to function properly; they will block me.”
Catastrophic fears about what might happen	Jill (case 1): “She is not feeling well and pukes a lot … the weight loss has to stop immediately, before it goes wrong!” (and Jill would lose her daughter). During the interview mother kept coming back to her daughter’s puking and how disturbing that was. Joe (case 2): When he sleeps, he cools down, and if I put my hand on his cheek and he is completely cold … in a fraction of a second … I wonder if he is still breathing.”

Table

1. Can you tell about the pregnancy and birth? We would like to know how you felt emotionally and physically and how the first period was at home (feeding, sleeping, crying)?	9. Does your child often get upset? What do you do and how do you feel when this happens?
2. Can you describe the character of your baby (name) in five adjectives and give examples?	10. Tell one of your favorite stories about your baby (name)
3. Who does your baby (name) remind you of and in what way?	11. Are there any experiences your baby (name) has had that you think is a setback for her/him? Why do you think that? Knowing what you know now, if you could do everything over with your baby (name), what would you do differently?
4. What is unique, different or special about your baby (name) compared to what you know about other children?	12. Do you ever worry about your baby (name)? What are you worried about?
5. What about your baby’s (name) behavior is the hardest to deal with right now. Give a typical example.	13. Some people would like their baby (name) to have a certain age. What age would you like for your child. Why?
6. How would you describe your relationship with your baby (name). Choose five adjectives to describe your relationship and give examples.	14. Looking ahead, what will be the most difficult time in your baby’s (name) development? Why do you think this?
7. What do you like most about the relationship with your baby (name). How do you think that your relationship with your baby (name), influences the character of your baby (name). Did your relationship change over time?	15. What do you expect (name) to be as a teenager? What gives you this feeling? In this period of your baby’s (name) life, what do you expect to be good and what not so good?
8. Which parent is your baby (name) closest to? How do you know that? How do you expect it to change?	16. For a moment think of your baby (name) as an adult. What kind of wishes and fears do you have for this period?

Data availability statement

Privacy of the patients cannot be guaranteed when the qualitative data used in this study would be shared publicly.