Dr. Luís Gonçalves

Padeatrician
Coordinator of the Paediatric and Neonatal Intensive Care Units

Enfª Patrícia Inocentes

Nurse Specialist in Paediatrics
Responsible for Paediatrics and Neonatology

So much love for such a small bundle of joy

HPA Magazine 9

To date, Alice is our “most premature” baby. She was born at 27 weeks and 5 days and weighed a mere 1035 grams. She was in the Neonatal Intensive Care Unit (NICU) of the Hospital de Gambelas for nearly 10 weeks. The time necessary to face the world, with the same tenacity and courage she showed from the first minute. Twenty years from now, we would like to talk to Alice, to know what it is like to be born premature. For now, we’ll talk to the professionals who took care of her, the other heroes of the story.

The professionals of the neonatal intensive care units are technically and emotionally prepared to take care of premature babies, but even so, the challenge is always enormous, the experience always different, the dedication always total. Dr Luis Gonçalves and Nurse Patricia Inocentes, director and head nurse respectively of the Paediatrics and Neonatology services, share these experiences with us.

Dr Luis Gonçalves, Alice was the “Oh my God!” baby of the NICU. What motivation and challenges do such babies bring to the team?
A premature birth is always an emotional and anxious moment, not only for the parents, but also for the professionals. Each baby is unique; the entire team wants everything to go smoothly and for the baby to be treated as well as possible. Therefore, the birth of Alice, the smallest baby in our Unit, was a huge challenge and created motivation for the entire team.
She taught us that we can always do better. Each one of these babies gives us the strength and drive to be dedicated and committed, because all of our attitudes and everything we do as professionals can affect and be fundamental to the growth and development of the baby.
As such, everything must be measured to the millimetre – just like the medication given according to the baby’s weight – our actions must be monitored by the harmonious development of this baby. Everything is important and must be controlled, even if it isn’t actually a treatment; things such as the light and sound of the Unit are fundamental for this harmony.
We all know that the lower the gestation time the higher the risk of the baby having some type of sequelae, including death, so our care and attention to each and every detail are even greater.
Our work is only gratifying when, on the day the baby is discharged, we can give the parents healthier babies, without complications for their future. In other words, we have to use the incubator and all other human and technical means in order to be the healthiest “uterus” possible, in substitution for the mother’s uterus.

Does being born premature affect a lifetime?
This is a difficult question and the answer depends on the point of view of the paediatrician and the parents, which are inevitably different. 
For the parents, the birth of a child is always a unique event. During the pregnancy, the parents prepare themselves in a process of hoping that their baby will be perfect, but equally of fearing that there might be a problem. An idealised baby is formed, in the image of how the parents see themselves in the baby. 
In the case of a premature birth, this idealised image does not correspond to real life. The distance between these two images becomes enormous. All parents dream of a healthy baby, plump and full of life. Instead, they get the baby they had dreaded: scrawny, tiny, and with possible health problems. This brings about a clash between the idealised baby and the real one. It becomes necessary to go through a process of “grieving” for the idealised baby and falling in love with the real one.
This “grieving” process can include feelings of shock and disbelief, followed by sadness, depression and anger, until the situation is accepted.
Even after going through the “grieving” process, it is normal that the experience remains highly emotional and a true challenge for everyone involved. Having a premature baby in a Neonatal Intensive Care Unit is without doubt one of the most stressful moments any family and relationship/couple can face throughout their lives. I think that all of these emotional reactions can remain for a long, long time, or even a lifetime! For the parents, their baby is premature (fragile) forever!
For the paediatricians, being premature only lasts for the time necessary to ascertain that the baby does not present any consequences in development and growth, i.e., the real/chronological age corresponds to the corrected age.
The “chronological age” is the baby’s actual age, the time of his/her life starting from birth. For example: a baby born on 10 April will be 3 months old chronologically on 10 July. The “corrected age” is the age adjusted to the degree of prematurity. This is the age that the baby would be if he/she had been born at 40 weeks of gestation.
At roughly 2 years of age, these two ages correspond and it makes no sense to refer to this difference, because from this age, we refer to an ex-premature. The child will always be premature (because he/she was born that way), but in medical terms, this begins to be part of the past and the child will be like any other. 

Has our NICU received many premature babies?
In the majority of the developed world, the rate of prematurity is around 7-12% of the total number of births of these countries, which means that for every 10 births, one will be premature. Naturally, this rate will be higher in countries with fewer resources in perinatology or obstetric and neonatal care.
Similar to other countries and other neonatology units, up to now this year and, we have had 47 premature babies in our NICU (born before 37 weeks of gestation), which corresponds to a rate of 10.4% of prematurity.
Of all of these premature babies, the one with the lowest weight weighed 1035g and the earliest birth was at 27 weeks of gestation. The Alice.
The NICU combines very advanced and specialised technology, with trained health professionals specialising in caring for premature or sick babies. They are part of the neonatology team (paediatrics with specialised training in new-borns), specialist nurses and all other health professionals, depending on the specific problems of each new-born, such as cardiologists, surgeons, paediatric neurologists, physiatrists, physiotherapists, occupational therapists, geneticists, radiologists, ophthalmologists, social workers or psychologists.
Our Unit has every technical and human means to receive and treat these fragile babies. At the technical level, we have incubators, ventilators and other devices equipped with the most advanced and recent technologies in order to cope with these sensitive, special babies. At the human level, we have a trained, specialised multidisciplinary team. 
To conclude, I would like to mention that the continuous/daily presence of the parents should be part of the personalised treatment. They are allowed to stay in our Unit 24 hours a day. The parents are a fundamental element in and of the team. Their presence is always encouraged and supported; they have a determining role in the evolution of the baby and in the severity of illness.

Nurse Patricia Inocentes, how do you support and reassure these parents?
I don’t believe that any of these parents are truly prepared for a premature birth and they need to be enlightened, informed and above all, progressively integrated into the care of their baby. Sharing in the care is a way of working that is fundamental in helping these parents to interact and accept their baby, who is much smaller and fragile than the baby they had initially imagined. When they feel they can and touch, hold, make skin-to-skin contact (kangaroo method), breastfeed and take care of their child, the parents will become calmer, independent and confident. In this difficult period of hospitalisation, we always try to make the parents feel comfortable and necessary for the recovery of their baby.

What are the basic aspects that need to be taught?
More than just teach, it is of the utmost importance that we empower them in order to help the parents lose the fear of touching their baby. This is achieved by bringing the mother’s and father’s hands closer, first to hold, then to cuddle and later to carry the baby, change the diaper, bathe and take care of him/her independently. There are some things to be taught in this process that stand out, such as the kangaroo method, changing the diaper, the importance of the parents’ presence while the baby is in the incubator, and breastfeeding, including strategies to help maintain the production of breast milk until the baby can suckle. The parents stay with us all day and there are many learning moments between the parents and the baby, which help break down the anxiety and insecurity associated with prematurity while progressing towards strong bonding.