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July was very eventful for me and that had caused my on-line silence. I had a chance to visit again my beloved Finland and now I'm back with fresh thoughts and ideas (and also hundreds of photos). Enjoy! 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!
When it comes to inserting tubes, NICU staff is probably the most experienced in the world. Intubation is one of the first procedures we learn as young doctors in NICU. Some of us perform it through nose, some through mouth. But who performs it on mother’s or father’s chest? Well, I’ve seen it only once or twice, but that is a practice in Uppsala University Hospital. 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?✋✋✋
I had an amazing opportunity to visit NICU in the Turku University Hospital in 2016. They admit around 550 problematic newborns per year. About 10% of them are born below 30 weeks of gestation. The whole unit is practically based on 11 family rooms (single family rooms when possible) and additionally one larger room for 4 patients. The larger room is usually used for babies who are admitted due to transient issues (tachypnea, hypoglycemia, hyperbilirubinemia etc). Single family rooms are equipped with an incubator/open warmer bed/cot, one adult bed, one reclining armchair and a nappy changing station. There is also a breast pump and a refrigerator for breast milk in the room. Parents are constantly involved in the care of their preterm baby and are welcome to stay and care for their child all day and night. That’s the theory. So what is the reality? Entering the unit for the first time, the word that came to my mind was „serenity”. The unit welcomes you with knitted octopuses and tiny socks everywhere. The whole design of the unit is somehow soft, warm and calming. Each family room is „protected” by a closed door with a window in them - and the window is also covered with a pastel-color quilt. If you want to enter the room, or you’re just looking for your co-worker, you can just „peek in” and check without disturbing the family much. Then you can knock on the door and enter the room. This way you are giving the family the maximum privacy we can offer in those special circumstances. 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!