FROM TARREGA'S MEMORIES OF THE ALHAMBRA TO SIBELIUS' TUONELA SWAN: EXPERIENCE OF A SPANISH NEONATOLOGIST IN TURKU

I remember very well the first time I heard about developmental and family-centred care, back in 2010, when I was just a neonatologist in training, looking in awe at the pictures of the Uppsala Unit. I knew then that this was the path I wanted to follow, although at that time it seemed utopian... Years later my boss and mentor, Dr. Perapoch, told me a similar anecdote when in 2003 his colleagues visited a Danish neonatal unit: that visit opened their minds. They were there to learn about CPAP and what they brought back with them was a discovery that had an equal or greater impact on the health of the infants and their families: the kangaroo care and the supportive environment.  That was more than a decade ago and I am still walking in that direction, convinced, despite the obstacles, that there is no other possible horizon in modern Neonatology.

In 2018, European expert group recommendations defined eight principles for newborn-centred and family-integrated care¹ consistent with the European Research Network on Early Developmental Care (European Science Foundation)². In Spain, there are two Newborn Individualized Developmental Care and Assessment Program (NIDCAP) training centres and seven neonatal units that include NIDCAP-certified professionals. Moreover, several units have started to work on different training programmes for developmental and family-centred care³.  A survey examining the eight principles previously published was sent to all Spanish level-III public neonatal units in 2018. Results indicated that none of the Spanish NICUs surveyed had completely implemented the eight principles³. Principles related to the family (parental presence and psychological support) were implemented significantly more often in units with a greater number of very low birth weight (VLBW) infants. Free 24/7 parental access with no limitations is essential for a real infant and family-centred developmental care implementation. In Spain, free parental access was present in 11% of Spanish NICUs in 2006⁴, which increased to 82% in 2012⁵ and 95.4% in 2018³. However, although most of the units defined themselves as having an open-access visitation policy for parents, many of them imposed restrictions so that access was not in fact unlimited^6,7. Indeed, even if the number of neonatal units with 24/7 access has increased in the last decade, it is not enough. We should still make an effort to remove barriers and promote facilitators to encourage parents' presence and participation during medical procedures or ward rounds. Another unresolved key point, according to the survey findings, was the scarce availability of health care professionals to provide psychological support to parents during and after their infant's admission. Skin-to-skin contact was fulfilled by almost 70% of the NICUs³.

I came to Turku determined to find a way to overcome these barriers, not knowing that what I would find would be the closest thing to l'isola che non c'é, by the Italian singer E.Bennato. It was as if I had returned to the future and found myself looking through the eyehole of the door at what I would like to be my NICU ten years from now at the latest.

I was convinced that in order to achieve real and sustainable change in care, the intervention should aim to change the attitudes and beliefs of each professional who work with newborns and their families rather than aiming to change single care practices of the unit. Empowering professionals to empower families, that was the challenge. And here in Turku, they had achieved it, it was not a utopia!

Sometimes it is enough to change the direction of your gaze to see more clearly, said the French writer Saint-Exupéry. It was as easy as looking for the pole star, guided by the Chariot, as Ulysses tried to do on his return journey to Ithaca, or where the moss grows, or where the compass tells you... north.  During these two months in the NICU of the Turku University Hospital, I have had the opportunity to see with my own eyes the revolutionary power of critical training based fundamentally on practice and reflection to bring about change. Nine years after the group led by Sari Ahlqvist-Björkroth, Zack Boukydis, Anna Axelin, and Liisa Lehtonen successfully implemented and extended their training Close Collaboration with Parents Programme, the "revolutionary" idea that parents are the main facilitators of the proper development of their baby, whether healthy or sick or born prematurely, had become indisputable and inherent in the mindset of both professionals and families in this Finnish unit. I spoke with nurses, with paediatricians, with families, I observed the babies admitted there, and all of them transmitted me unequivocally the same mantra: the participation of families is indispensable in neonatal care, a critical stage of life for both newborns and parents.  How to achieve this is perhaps the next biggest challenge and it is clear that Finland is one of the countries with the most supportive and enviable social policies to do so, but it is not the only thing that is needed. Teamwork, good communication, active listening, and respect for diversity and otherness among professionals and between professionals and families are essential.

One of the biggest lessons I learned from humanitarian work is that the necessary ingredients for a successful action are: humility, respect, and collaborative work. Without asking beneficiaries about their real needs and capacities, without empowering the development of their skills and making them active subjects of intervention and care, aid will never be sustainable over time. As the indigenous activist and artist Lila Watson said: "If you have come here to help me, you are wasting your time. But if you come here because your liberation is bound up with mine, then let us work together".

Moving from a care model centred on the professional who relates to the patient in a vertical way, seeing and treating them as vulnerable and lacking in decision-making capacity or autonomy, to a model centred on the patient (and family in the case of neonatal care) endowed with capacities and skills, who relates to the professional in a horizontal and collaborative way, is possible and imperative for all of us to enjoy greater physical and mental health. And Turku is a clear example that it is possible.

In my personal journey to Ithaca I have been accompanied by extraordinary people: the nurses and Sanna and Helena, with whom I had the opportunity to get to know their training programme in depth, carrying out the individual practice sessions as bedside practice, and sharing their experience as trainer-mentors from the difficult beginnings in their own unit to their current challenge to continue extending to more Finnish and European units; the psychologist Sari, one of the promoters of the programme, with whom I shared knowledge and exercised the incredible and exciting art of critical reflection in a relaxed and, at the same time, professional atmosphere; the families of N. , S., J., O., who allowed me to enter and stir emotions, memories and thoughts at such a critical and difficult time in their lives, and who confirmed to me that parents also have a voice that wants to be heard, because we need them to take better care of their babies and they need us to be able to feel and act as parents. And finally my two bosses, the one over there (Josep Perapoch) and the one over here (Liisa Lehtonen) who gave me the chance to enjoy this experience in my own way and whom I deeply admire for their tenacity and love for Neonatology in general and for families and their babies in particular.

All these people have facilitated (and I am sure that they will continue to do so with their example and support) my particular process of gestation as a neonatologist, woman, and mother, as well as that of all neonatologists, fathers, and mothers of the present and future, because utopia is not far away, as Galeano said, but is ever closer.

Kiitos

"In dark times we are helped by those who have been able to walk in the night, showing us that the obstacle does not prevent history. Only those who are capable of embodying utopia will be fit for the decisive combat, that of recovering what humanity we have lost" (Ernesto Sabato)

Angela Gregoraci, Neonatologist

Hospital Dr. Josep Trueta, Girona, Spain

References:

1-Roué J-M, Khun P, Lopez-Maestro M,et al. Eight principles for patient-centred and family-centred care for newborns in the neonatal intensive care unit. Arch Dis Child Fetal Neonatal Ed. 2017;102(4):F364-F368

2-Research on Early Developmental Care for Extremely Premature Babies in Neonatal Intensive Care (EDC). Secondary research on early care for extremely premature babies in neonatal intensive care units (EDC). http://www.esf.org/index.php?xml:id=1514. Accessed October 10,2019

3- López-Maestro M, De la Cruz J, Perapoch López J, et al. Eight principles for newborn care in neonatal units: Findings from a national survey. Acta Paediatr.2020;109:1361-1368

4- Perapoch López J, pallás Alonso CR, Linde Sillo MA, et al. Developmental centred care. Evaluation of spanish neonatal units. An Pediatr (Barc).2006;64:132-139

5- López-Maestro M, Melgar Bonis A, de la Cruz-Bertolo J, Perapoch López J, Mosqueda Peña R, Pallás Alonso C. Developmental centred care. Situation in Spanish neonatal units. An Pediatr (Barc).2014;81:232-240

6- Raiskila S, Axelin A, Toome L, et al. Parents' presence and parent-infant closeness in 11 neonatal intensive care units in six European countries vary between and within the countries. Acta Paediatr.2017;106:878-888

7- Greisen G, Mirante N, Haumont D, et al. Parents, siblings and grandparents in the neonatal intensive care unit. A survey of policies in eight European countries. Acta Paediatr.2009;98:1744-1750

please #staythefuckhome. In many grant proposals, we write "this research has the potential to save lives, because... ". Let's face it- most of our research won't save lives (or at least not at once)*. No matter how fantastic our research projects are, science takes time. But what can actually save lives immediately is US STAYING HOME. This way we - the (relatively) young people in big academic campuses- won't be spreading the virus that might be deadly for others: for an old lady in the shop (who takes care of her ill husband at home), our senior supervisor (who is also an attending in the unit, so in case he gets sick, they would be running understaffed), a young mother (who will have only moderate symptoms, but will have to arrange some care for her children- possibly transferring them to her own parents, exposing them to an infection).

Let's think outside of our own bubble. I don't know if there's much more we can do, but if we are lucky, it might be just enough.

Work from home, write from home, think from home, read from home. We always complain that there's not enough time to read and learn- here's your chance!

And if your main area of interest is neonatology, there's a fantastic treat for you- if you stay home. Karolinska NIDCAP Training and Research Center organizes a *fabulous* online conference. Go to their  pages, write an email (stina.klemming@sll.se) and get your link to access this amazing event. 

Kind regards,

Katarzyna #staythefuckhome Piatek

*unless you're actually working on the vaccine or new drug for coronavirus- then just keep working ❤️ 

1.Get nylon pants. 
The weather in Finland is truly whimsical. We have had a kind spring, warm summer, and lovely, colorful autumn. I was able to enjoy each of these seasons, biking in the Archipelago, watching sun that never sets, traveling north to see ruska, and finally seeing Northern Lights for the first time in my life. My only concern here is rain. It doesn’t follow laws of gravity AT ALL. How is that possible, that those raindrops are not falling DOWN from the sky, but they are literally attacking you from every direction? It took me some time to overcome my frustration and find a solution. I have closely observed (relatively) happy Finns and discovered that the most important clothing item here is… nylon waterproof pants. The trick is they have to be big enough that you can pull them over your regular pants to keep you dry and warm when it rains. This small thing has definitely improved my comfort here. It has also created that precious feeling of belongingness- I could finally proudly join the rustling and swishing sisterhood of waterproof pants.

2. Drop in the fertility rate is a real thing.
Ok, I am a doctor and I KNOW it is a real thing. I know that statistics don’t lie. I know. But I kind of didn’t want to acknowledge that it may actually impact my study. We have had a fairly good start of the patient recruitment, which had kept me busy in spring. But then summer had arrived, and the recruitment slowed down. I kept thinking that maybe it’s just because of the summertime in general (like preemies would be able to pick a season when they want to arrive early, right?). But then autumn has come, and it was time to face the music- I have a problem. In order to recruit the desired number of infants, I may either stay here forever OR I need to come up with a clever solution very soon. Thankfully, I have amazingly supportive supervisors here and we decided- we are expanding! That means more traveling for me (and possibly more blog posts for you)!

3. Compulsive talking about 99nicu may help you to dance more salsa.
That statement may seem rather weird, but there is a logical explanation.
Very recently I’ve had a chance to attend a regional neonatal meeting in Finland. I was asked to present highlights from the 99nicu Meetup in Copenhagen. Since I like the whole concept of 99nicu.org and loved two conferences I had attended, I took that task very seriously- meticulously prepared my PowerPoint presentation and practiced my performance out loud at home. I decided to tell participants about lectures I remembered the best- neonatal transports, simulations in the NICU and infants surviving at the limit of viability. You may argue that there were more important lectures there, but those were the ones that still “spark joy” after all these months. Do you remember that sim scenario of postpartum seizures in a birthing pool that Ruth Gottstein talked about? I’ve discussed it with so many people in so many places already, that it might have become my favorite topic of random conversations with strangers. Anyways, I think the presentation went well- participants awarded me the prize for the best presentation of the evening! I received a gift card that I can use for cultural or fitness activities in Turku- including more salsa classes in my favorite dance school. Voila! Thank you 99nicu!

Kotiloma is a word in Finnish that means „vacation at home”. But in some NICUs around Finland it has grown into a bit different meaning. Kotiloma is a practice of arranging a little vacation at home for NICU patients before their final discharge. 

The routine is quite simple. On the kotiloma day parents come to the unit with a car seat and a set of clothes. When the seat is warm and the baby is ready, they just simply take their baby home for a day. Before they leave, they inform the staff about the time of their return. If they would feel insecure, they can always return to the unit sooner and their room will be waiting for them. The duration of the stay away from the unit can last from a couple of hours up to a whole weekend. Sounds interesting?

There are two basic conditions: parents' willingness and staff's trust in parents' abilities. Parents need to be confident when it comes to securing baby’s needs. Since kotiloma applies mostly to preemies, parents are generally well prepared (hello Family Centered Care!) and very eager to take the baby home for this vacation. It’s like a free trial of full-time parenthood and you can still bring the baby back  But seriously speaking, after spending several weeks in the unit with the baby, they really just want to change the surroundings and go out for a while. If the home is too far away, or if the thing is just logistically too difficult, they can take their child for a long walk in a baby stroller instead. Since parents are in the unit every day, taking care of their little one, it is quite simple for the medical staff (especially for the fantastic nurses!) to assess their preparedness, encourage them and prepare them also technically for kotiloma.

Basically there are two types of kids who go for a vacation to home. The first one is when the baby is being fed by a feeding tube and getting close to the discharge date. Parents generally feel quite comfortable with using the tube and since they are practically living in the unit, it’s not a big hassle for them to take the baby home with this tube. The second group of babies are the ones on an "apnea countdown" . Those are sent home with saturation monitors and parents are specifically educated by nurses to interpret heart rate and SatO2. They are additionally trained in infant resuscitation. This whole „crash course” takes no more than 1 hour. If the parents are eager for the kotiloma and the staff is ready to train them, they can take the baby home for the daytime (so they can observe the monitors, but those babies have to return to the Unit for the nighttime.)

If you are even a bit like me, and I know many of you are, you will ask „BUT WHO IS LEGALLY RESPONSIBLE FOR THAT BABY? WHO IS IN CHARGE IF ANYTHING HAPPENS?”. Well, since the kid is not really discharged from the hospital, that would be you. I know it sounds tricky, but my (not-so-)confidential informant Samuli Rautava from the TYKS NICU says, that since they’ve been doing that (already 5 years!), nothing has ever happened. If the family has any questions or concerns during the kotiloma, they are encouraged to call the nursing station. They are never left alone with their worries. When it comes to financial issues, I would say (naively) that nobody pays anything extra for that vacation. Since the kid hasn’t been discharged, the healthcare fund pays for the day in the unit. Parents provide their own car, clothes and the car seat. No more costs are involved. Easy as that  

Is it safe? Generally life is known to be a dangerous adventure  But it’s easy to notice, that this practice is based on a mutual trust agreement. "You- The Parents- trust us- The Medical Staff- every day, that we perform medical procedures based on our best knowledge and best available evidence. So WE trust YOU, that you will not idle away our efforts and do your best to provide the best possible care to your baby". This cooperation is working well. Parents are properly educated in their baby’s needs (thanks to Close Collaboration with Parents Training Program). They learn how to perform CPR and call 112 in case of emergency. The nursing staff always gets the information about the condition of other siblings and cohabitants (to avoid infections etc).

Okay, but what are the benefits? Besides empowerment of the parents (which is a huge thing, especially since they are on-their-way to the discharge date), it actually makes the whole discharge process easier. After the kotiloma parents' confidence grows. It is like a short trial of full stay-at-home parenthood. When you take your precious, fragile baby home, some questions may arise in your head. It feels good to know, that you will be able to ask them to your own pediatrician and nurses when you return to the unit.

This practice enables parents to observe their child in a home setting. They notice how the baby looks around and curiously contemplates the new environment. It is also a good chance for other cohabitants (those furry ones too!) to get to know their future housemate. Kotiloma is simply a joy for parents, baby and whole family. A sign saying „our baby is doing fine”. Some happy moment to cherish. We all need those sometimes!

What do you need to perform it? An intubation set. A baby, that actually needs that intubation. It can be a planned or an acute one. And then you need that special thing- a parent (or a caregiver), that is willing to help you with the procedure.

When I came back from Sweden, I shared this crazy idea with one neonatal nurse. She told me, that it must be extremely stressful for the parent and that she considers it inhumane to push parents to do that. Well, I can say that I partly agree with her, giving the specification of the unit she worked in at that time. It was a medium size NICU of the highest reference, where parents were welcome to visit the baby, but there were no beds for them, and the chairs for the kangaroo care were each time brought in for that short „session” of skin-to-skin care. LET’S TALK ABOUT SPONTANEITY THERE! 

But in Uppsala University Hospital this procedure is possible, because you have parents there all the time. They basically never leave the unit. If they are not doing skin-to-skin with their baby (watching a movie on a little player approved by the unit or reading a book), they are cooking or eating in the parent’s area or taking shower in their bathroom. They are not patients there, but they are staying there overnight, so in the morning you can see some of them sneaking out to the bathroom in their pyjamas. So in that situation, you don’t just have a scared parent, who is there from time to time, smiling nervously to his or her child through the plastic incubator. You have a semi-professional companion, who knows his or her baby’s needs best and who is there to care for their own infant.

So back to the main topic. Intubation on parent’s chest. Ok, you may say- that sounds okay, but what are the benefits? Why should we risk intubating on an unstable ground? I asked Erik Normann, the Head of the Department of Neonatology in Akademiska Hospital in Uppsala the same question. His opinion is, that in that way child stays in it’s preferred care site during this stressful moment. And in case of spontaneous extubation during skin-to-skin care, you don’t have to move the child back to the incubator to place the tube, so this is quicker. And that skin-to-skin care just continues after the procedure. There’s no special technique or limitations for that procedure, but he admits, that it creates some logistic problems with the staff position around the bed. Also, bending over parent’s chest is not the most optimal working position (especially for taller doctors 😉). But what you get in return for that effort is a happier baby, supported and stabilized by their parents hands.

I’m not sure if all of us are „there yet”. What is the more important, is that we are heading in that direction- to this mental NICUland, where parents are there for the baby all the time, to offer warmth of their skin and delicacy of their touch, and where medical staff is ready to accept their help and presence. Together we can do more!

So hands up guys- who does that too in their unit? Who would like to try?✋✋✋

Well, you have those tiny, „problematic” children in those private family rooms, with their parents being their primary caretakers, guardians and gate-keepers. Yet, nobody feels that their access to the patient is limited. How is that even possible? Maybe this is what we call „the change of the caring culture”? When you’re „letting go” of some of your duties and delegating them to the parents, you also learn to trust them with your little patient. After all, we all have the same goal- and the parents are personally and emotionally interested in their own child’s well-being, so they have even stronger motivation to perform well.

Visiting you patient in the single family room feels like visiting your friends, who had just brought their newborn back from the hospital. Imagine the situation, that you’re paying them that first visit, with a little gift wrapped in a pink paper and a big pink balloon. What will you expect? I think it’s quite normal that their room will be a bit messy and everybody will be whispering around the sleeping baby. It’s normal that the mother will be breastfeeding (or pumping milk) in your presence. And again- it’s normal that parents will be touching and cuddling the baby.

I’ve visited several neonatal intensive care units around the Europe. They all announce proudly, that they are „family centered units”. They all know that skin-to-skin care is a recommended, good and beneficial procedure. Yet in the same time, they actually treat it like a medical procedure - which is time-limited and full of exclusion criteria. That procedure also seems to be quite stressful for the medical staff, because they feel like they can’t access their patient anymore. What if something happens, what if we need to react, how to save that baby when the baby is outside the cot? How can we be medical professionals, when the patient is out of reach?

It comes straight to the question: what exactly is skin-to-skin care for you? Is it a medical procedure, which is performed once or twice a week, for one hour, when the baby (and the parent!) is fully dressed? Or do you consider mother’s and father’s bare chest as a new space of care for your patient? A safe surrounding, stabilizing baby’s body temperature, breathing and heart rate?  And what do you consider a contraindication for skin-to-skin care? 

Recently I’ve heard from my friend that in their NICU (highest reference centre) kangaroo care is performed only after the baby reaches 1600g. In other place, I’ve seen a healthy 31-weeker in his second week of life, on full enteral feeds, happily kicking in a closed incubator, who couldn’t be kangarooed or even touched by his parents, just because there was a PICC-line placed in his arm. I still remember those sad parents, wearing plastic gowns, standing by that closed incubator, not being able to even touch their own baby, just because it was a preemie. 

Prematurity is a diagnosis, but it’s not a sentence! If we are treating similar babies with similar equipment and similarly trained staff - why does our practice differ so much? Leave your comment and join the discussion!