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The value of Family Centered Care  

Looking beyond the vital signs in a neonatal intensive care unit



In 1970, when I was three, I remember my mum was pregnant. But something was wrong. She gave birth to Anna, a premature baby, probably not too early by today’s standards but certainly very premature for the early seventies. She died after only a few days of life. In the following years my parents told me that, along with the doctors who cared for her, they hoped that the little one wouldn’t make it.


“If she survived,” said their caregivers, “she would surely have suffered severe disabilities.”

Six years ago, a completely different era for medicine compared to the 70s, history tried to repeat itself. My wife was expecting a girl, but after 22 weeks of gestation, her growth slowed down. At 27 weeks she was diagnosed with preeclampsia and was immediately hospitalized at the Mangiagalli Clinic in Milan. We were told that our daughter would be born preterm within a week regardless of our will.


From that moment all of our parental plans were for naught. It is difficult to define what is happening: is this a happy event or is this a tragedy? The conflicting emotions are so strong it dulls your senses. You are somehow anesthetized and your spirit grows old and scared.


Exactly a week later, on June 1, 2009, my daughter was born. She was an ‘SGA,’ I was told, which means Small for Gestational Age. She was a bunny weighing just half a kilogram, skinny with skin shriveled like an old woman. But to us she was utterly beautiful.

She spent the first few hours of her little life without a name. When my wife woke up after the emergency Caesarean we finally gave her a name: Anna Lu. It was the start of our journey into the Neonatal Intensive Care Unit (NICU) at Mangiagalli Clinic, which was both exciting and nerve-wracking at the same time.


There we learned to never trust appearances: the little ‘bunny’ Anna Lu fought like a lion against breathing difficulties, subtle infections, shortage of red blood cells and other pitfalls of being born premature. If she fell, she got up; if one day she slowed down, the next day she began with more force.


We, the parents, were the real ‘rabbits’ - frightened, poised on a precipice and fed by a thousand unknowns about the future. We were burdened by the inability to be certain about any medium and long-term complications.


NICU parents have to be taken care of as much as the children, in some ways even more. Children display signs of their own strength and it is up to parents to learn how to read and use them to build their own strength and serenity.

A child requires a positive reaction from the touch of hands, from the beating and breathing during the Kangaroo care, and from the tone of voice of the parents. In this sense, the concept of “Family Centered Care”— personalized care centered on the entire family — is in my opinion the only way to treat premature babies.


Medical science, medicines and technology alone are not enough to achieve the miracles that happen every day in the NICU. In Mangiagalli parents, who have access 24/7 to the department, are encouraged to become an active part of the care process, becoming themselves the object of care, gaining safety and confidence and alleviating their baby from sufferings and small ‘tortures’ coming from the NICU.


The NICU is still far away from the welcoming womb, but it is improving thanks to renewed attention to noise control, containment of light pollution, reduced use of invasive medical procedures and, especially to the presence of parents, a medicine that is good for the hearts of all three.


So, four and a half months after June 1st, Anna Lu ended up being born and we could take her home, thanks to God and science, safe and sound.


I am certain that premature babies like Anna Lu have a strong memory of their stay in NICU; not a conscious memory but a biological one. After the primary goal of survival, the aim for all of the caregivers is to make this period less shocking to the child, and the parents.


It goes from an approach in which the baby is the only patient to one in which the unit takes care of the parents too, so that they can heal themselves. Doing this, with attention also being paid to the right environmental stimuli, the Family Centered Care approach becomes an incredible resource for the child, supporting them while they overcome the trauma of a troubled birth.


It would be nice to think that the importance of Family Centered Care ends with the hospital stay, as if the chapter can be closed and forgotten. But the journey goes on for some less fortunate children, even longer. It is important that the ‘care’ of the whole family continues outside of the hospital environment.


We are lucky in that Mangiagalli has a free follow-up service, which continues supporting children and their families for several years after discharge and it does so with a multidisciplinary team that assists each case according to its own specificities along three main pillars: pediatric, psychological and physical therapy.


For us this continuation of the Family Centered Care was important as it gave Anna Lu — and us — time to overcome some emotional fragility.


Anna Lu is now six years old. She goes to primary school and is a strong child: emotionally balanced, skinny and beautiful. Seeing her grow up every day has been the best present ever. Seeing her walk, talk and play with other children is an immeasurable joy, since parents of a preterm baby tend to reset their expectations.

In this sense, having a premature baby is a great gift and a privilege, because we had on our side wonderful people who taught us to look beyond the ‘vital signs’ and toward the heart.


For more information on Family Centered Care for premature babies and their parents, download Mangiagalli Clinic, Milan: A benchmark for neonatal intensive care.


Gianfranco Giardina 

Editor in Chief of


Gianfranco Giardina is an engineer and journalist, dealing with digital and new technologies. He runs the online magazine Since his daughter was discharged from the Neonatal Intensive Care Unit at Mangiagalli Clinic he has continued to work as a volunteer at the Unit and became a board member for AISTMAR Onlus, a non-profit organization that works to support small premature babies and their families.


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