Acta Pædiatrica ISSN 0803-5253

A DIFFERENT VIEW

Our child is not just a gestational age. A first-hand account of what parents want and need to know before premature birth Katharina Staub ([email protected]), Jason Baardsnes, Nina Hebert, Michael Hebert, Stephanie Newell, Rebecca Pearce be s Pre mature s Canadiens, Sherwood Park, AB, Canada Canadian Premature Babies Foundation-Fondation pour Be

Correspondence Katharina Staub, Canadian Premature Babies  be s Pre mature s Foundation-Fondation pour Be Canadiens, 432-52304 Range Road 233, Sherwood Park, Alberta, CND T8B 1C9, Canada. Tel: 780-718-0342 | Fax: 780-416-4566 | Email: [email protected] Received 7 May 2014; accepted 5 June 2014 DOI:10.1111/apa.12716

We are the parents of children who were born extremely prematurely. We had different experiences, but have similar reflections, and we hope that these will help clinicians understand what parents want and need from them before a premature birth.

OUR EXPERIENCES Marcus was born at 23 weeks, weighing 585 g, and I was told that he did not have a chance. During the labour process, I was not provided with any opportunity for shared decision-making, which is more than counselling, so that I could gain the knowledge I needed to make informed decisions. Prenatal steroids and tocolysis were not offered. The clinicians based their decisions purely on gestational age and were not open with us about the biggest decision of our lives. We felt like passive spectators in a horrible film. Marcus died. We later found out that other parents of babies like Marcus were offered different options and that many babies die, but some survive. This betrayal of trust by those we relied on, those who had our lives in their hands when we were at our most vulnerable, had an additional impact on the crushing weight of our grief. One never completely gets over the death of a child.

Articles in the series A Different View are edited by William Meadow ([email protected]). We encourage you to offer your own different view either in response to A Different View you do not fully agree with, or on an unrelated topic. Send your article to Dr. Meadow ([email protected]).

We delivered our twins Maren and Lily at 25 weeks, after being given many percentages about ‘preemie outcomes’ (Figs. 1 and 2). Lily died after a few days in the NICU. We had lost 50% of our children. After Lily’s death, we wanted doctors to put information into context for us, with respect to Maren’s life. One of the best doctors we had would honestly answer our questions – ‘should we be worried?’, ‘could she still die?’ – with either a yes or a no when we asked about medical issues like fluctuating oxygen levels and infections. This was both refreshing and reassuring. But more information is not always good. We were destroyed after Maren had a term MRI, which revealed moderate damage to her cerebellum from a previously undiagnosed bleed (1). We would not have accepted the MRI had we been adequately informed. Luckily Maren survived. All neonatologists should try to figure out parents’ expectations, so they can tell them how much information they need. Parents need to know what terrifying phrases like ‘neurodevelopmental disability’ or ‘cerebral palsy’ really mean to families. The reality is that neurodevelopmental impairments are generally far less grim than the medical literature implies. Domenica was born at 22 weeks (Figs. 3 and 4). I was admitted to hospital and confined to bed. I was also offered an abortion. I had told a visiting neonatologist that I did not think Domenica would make the 24-week mark. To my relief, he said that they can resuscitate at 24 weeks when the weight is above 500 g. We wanted to give Domenica a chance. We understood the numbers. We fought for prenatal steroids instead of an abortion. Domenica weighed 530 g at birth and responded well when they intubated her. She had a rocky course. They asked me whether I wanted to unplug her lifesupport systems twice. We believed that it was not our

ª2014 Foundation Acta Pædiatrica. Published by John Wiley & Sons Ltd 2014 103, pp. 1035–1038

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Figure 1 Maren in the neonatal intensive care unit. Figure 3 Domenica in the neonatal intensive care unit.

decision to take her life, but one that should be made by her and her Maker. We did not want to choose the date of her death. We did not need to be smothered by the palliative care ‘pillow’ – using this language in excess for preterm babies is kicking them when they are already down. We never know where that preemie can take us. Never. Thanks for giving Domenica the opportunity. She is the sun in our lives. I was on bed rest for 3 weeks before the birth of our twins Max and Nadia (Fig. 5). My perinatal counselling was mostly about statistics and negative ‘outcomes’ and devoid of hope. I was alone as my husband could not be with me. This list of bad outcomes caused me a great deal of stress, during a time when I was trying to stay as positive and hopeful as possible. Our children were born at 27 weeks, when there is no ‘choice’ about intervening. Why then stress the negative ‘outcomes’? We wanted to be understood in our time of crisis and uncertainty. We would have preferred real conversations about our children prior to their birth, including what they would look like and how we could best support them as parents in the NICU. Despite some challenges, we love our children the way they are and they give us immense joy.

Figure 2 Maren at the age of four.

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REFLECTIONS Gestational age We have serious concerns about policy statements based primarily on gestational age (2) as some babies will survive at 22 weeks, while others will die at 26 weeks. Parents have access to the literature, and we know that many factors other than gestational age are important (3). We know gestational age is uncertain, and taking life and death decisions on uncertain numbers is not acceptable to us (4). Our children deserve better. Predicting the future Neonatologists seem to like statistics and percentages. When we deliver preterm, we do not have 10 children. Some of us had twins and left the hospital with 50% of our children, others lost 100% of their children. For us, 15% survival means that some babies survive. We understand that clinicians need to examine outcomes and classify children: they can either have serious, moder-

Figure 4 Domenica at the age of 2 years and 4 months.

ª2014 Foundation Acta Pædiatrica. Published by John Wiley & Sons Ltd 2014 103, pp. 1035–1038

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Figure 5 Max and Nadia at the age of 4 years and 6 months.

ate, or mild disability or may be classified as ‘typical’. These categories were created by physicians. If we were asked to classify our children as disabled or not disabled, then doctors would have different categories. Why is hyperactivity a mild disability and cerebral palsy a major one? When we were about to deliver, we did not want a long list of diagnoses and their medical explanations. We needed to know what other parents, those who were once in our position, thought about their life, their children and their family. When we read the medical literature, we generally find an exhaustive list of what preterm infants may not be able to do. We have never found a list describing what they can do and how they enrich the lives of their families and other people who love them.

RECOMMENDATIONS FOR HEALTHCARE PROVIDERS 1 Tell women that there is nothing they could have done to prevent the premature birth from happening. 2 Our unborn children have a story and are part of our hopes and dreams. Do not use gestational age to categorise our child. Ask us if our unborn baby has a name. 3 Each baby is different. Have a personalised approach. You can tell us what generally happens to children about to be born at the same stage of gestation as our child, but please also describe to us the particularities of our child that will influence his or her outcome. 4 Each family is different. We disagree that every family needs to receive extensive information about everything negative that may happen. Some parents want statistics, others want the general picture. Some parents want to make important decisions on their own, while others want recommendations. Please listen to us individually. 5 We need to trust you. Do not tell us that babies at 22 or 23 weeks do not survive. Do not tell us that most preterm infants are disabled. We rely on you to know your data. Reflect on the difference between medical

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numbers and medical values. Do not tell parents that their child will have a negative impact on their family. You do not have data to support these claims. Many clinicians decide that giving babies a chance is not worth it for a 10%-20% survival rate. Our discussions should be about values and not so much about percentages. 6 Give us balanced information. Tell us about what our children may, or may not, be able to do. Also tell us about the quality of life of other preterm infants have when they get older (5,6). 7 Words are important. Before our child’s birth, do not ask us if we want to do ‘everything’ or ‘nothing’. Have you ever met parents who wanted ‘nothing’ for their child? Do not use the word resuscitation, as premature infants are not usually defibrillated. That is what we think resuscitation means when you use that language. Use the word stabilisation instead. 8 Do not take away the hope we have. There is always hope that we will deliver tomorrow. There is hope that we will be able to spend some time with our child. There is hope that we can survive the death of our child with positive memories. Do not abandon us. Instead, tell us that you will be there whatever happens. 9 Empower parents. When other family members are present, emphasise that strong families are important. 10 Be proud of the work you do. It is so important to us. You make it possible for us to share precious time with our babies. You are the heroes for so many families. You help babies survive and we are thankful for that. In our opinion, guidelines that are just based on gestational age make decision-making easier for physicians, not for parents (3,4). We hope that in the future, parents can collaborate in writing position statements about counselling before a premature birth. You are the medical experts of prematurity. We are the experts when it comes to the lives of our children and our families. For doctors, these discussions are routine. For us, these conversations change our lives forever.

References 1. Pearce R, Baardsnes J. Term MRI for small preterm babies: do parents really want to know and why has nobody asked them? Acta Paediatr 2012; 101: 1013–5. 2. Jefferies AL, Kirpalani HM; Canadian Paediatric Society FaNC. Counselling and management for anticipated extremely preterm birth. Paediatr Child Health 2012; 17: 443–6. 3. Tyson JE, Parikh NA, Langer J, Green C, Higgins RD; The National Institute of Child Health and Human Development Neonatal Research Network. Intensive care for extreme prematurity - moving beyond gestational age. N Engl J Med 2008; 358: 1672–81. 4. Janvier A, Barrington K, Aziz K, Bancalari E, Batton D, Bellieni C, et al. CPS policy statement for prenatal counselling before a premature birth: simple rules for complicated decisions. Paediatr Child Health 2014; 19: 22–4.

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5. Saigal S, Stoskopf B, Streiner D, Boyle M, Pinelli J, Paneth N, et al. Transition of extremely low-birth-weight infants from adolescence to young adulthood: comparison with normal birth-weight controls. JAMA 2006; 295: 667–75. 6. Saigal S, Rosenbaum PL, Feeny D, Burrows E, Furlong W, Stoskopf BL, et al. Parental perspectives of the health status and

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health-related quality of life of teen-aged children who were extremely low birth weight and term controls. Pediatrics 2000; 105: 569–74.

ª2014 Foundation Acta Pædiatrica. Published by John Wiley & Sons Ltd 2014 103, pp. 1035–1038

Our child is not just a gestational age. A first-hand account of what parents want and need to know before premature birth.

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