Premature new-borns - a challenge for parents and for physicians

How many new-born infants born prematurely are referred to your clinic?

Approximately 2,500 births take place in the paediatric hospital each year, and around 150 new-borns are prematurely born. These are new-borns of varying maturity, born between 22 and 37 weeks' gestation, with various health problems. Around 150 premature infants from other hospitals in our province are also admitted to the clinic every year. Increasingly, we are also treating premature babies with defects or health problems who were born outside our province and are transported to us by air transport.

The former Neonatology Clinic - there is now a Clinic for Neonatology and Rare Diseases. Where has this change come from?

Our Clinic is a third-level referral centre, which means that we treat the most difficult conditions in the smallest patients. We admit new-borns who have the biggest and most complicated health problems. These are often severe congenital defects and rare diseases, i.e. diseases that affect a very small percentage of children and even those that have not been diagnosed before. For example, the congenital defect of diaphragmatic hernia occurs at a rate of 1 in 4,000 births, and we treat 30 new-borns with this defect each year, which means that we would treat almost 50 new-borns per 4,000 births. We also treat new-borns with other rare conditions, including genetic, metabolic or neurological ones.  The procedures, both diagnostic and therapeutic, that such patients require are very expensive and complicated. All this has caused us to change the profile of part of the clinic. What is more, since October, the billing rules for services in neonatology have changed, according to which we cannot hospitalise patients after the age of eight weeks. Meanwhile, premature infants often need to be hospitalised again at 3, 4, 5 or even 6 months of age. It is worth remembering that these are very small patients and, for example, in the third month after birth they reach a weight of only 2 kg.  For this reason, paediatric departments where older children stay are not the best place for them to be further diagnosed and treated. Therefore, I believe that this change has been necessary, as it will allow us to continue treating the smallest premature babies in our clinic.

The clinic has become part of the Centre of Excellence at the WUM for Rare and Undiagnosed Diseases - what does this mean in practical terms?

We are committed to making our clinic part of an international network of reference centres for rare diseases in new-borns. This offers very great benefits. First and foremost, the opportunity to share experiences. Being part of an international network means that we share our experiences and benefit from the experience of experts from all over the world. And this contributes to faster diagnosis and better therapy for young patients.

Approximately 300 premature infants with various health problems are admitted to the clinic every year. How many of them can be successfully rescued?

It all depends on the type of birth defect and the degree of prematurity. There are lethal defects, which unfortunately have a miserable prognosis. There are also defects that are very complicated, difficult to diagnose and difficult to treat. The worst case is when we are dealing with so-called malformation syndrome and the problem involves multiple systems or organs. For example, we receive small premature babies in whom we find a defect of the nervous system, which can be treated, but is accompanied, for example, by a heart defect, which in the case of very small premature infants is inoperable. The more premature baby, the more complicated the defect or if there is a syndrome of several defects - the less chance there is of a successful treatment, unfortunately.
On the other hand, when it comes to preterm birth itself, premature infants weighing less than 600 grams are currently the biggest challenge, not only because of the high mortality rate, but also because of the numerous complications that can occur in those who have survived.

What is the diagnosis of such young patients?

More and more new-borns are referred to us for surgery due to defects of the heart, nervous system, gastrointestinal tract defects and many other ones. It results, among other things, from the fact that state-of-the-art and nationally unique diagnostic methods for these defects are available at our hospital. We can therefore determine with a high degree of probability what kind of defect we are dealing with already before the birth. Even before the birth, we meet with the parents in a group of specialists, including perinatologists, obstetricians, cardiologists, cardiac surgeons, anaesthesiologists, surgeons, neurosurgeons and others, and discuss what we will do after the birth.  The parents participate in the discussion, ask questions and decide together with us on the treatment strategy for the new-borns after birth.  In the case of severe defects, we can plan the labour, which makes the postnatal management much safer, as prepared specialists are already waiting for the little patient to arrive. Sometimes, in the case of a very severe defect, the new-born is transported from the delivery room directly to the operating theatre for treatment. Such a rapid start of treatment is possible thanks to very modern diagnostics and the extensive experience of the entire team, which results in a significantly improved prognosis for the child.

How comprehensive the team must be when caring for premature infants?

The care of extremely premature preterm infants requires a number of specialists with extensive experience, including physicians and nurses, as well as therapists. At the clinic, we pay the greatest attention to implementing the latest standards in diagnosis, treatment and care. This requires ongoing training for both physicians and nurses. At the same time, I would like to draw attention to the fact that very premature preterm babies, due to thermoregulation disorders, have to stay in an incubator for 2-3 months, which predisposes them to a disrupted pattern of normal development. Only timely and professional developmental stimulation of preterm infants under the guidance of a physiotherapist can ensure the child's future development. A proper physiotherapy of the respiratory system of the preterm infant is also extremely important; it helps to remove secretions, improves the respiratory capacity and allows a quicker disconnection from the ventilator.  Cooperation with neurologists is equally important. Extremely premature preterm infants do not yet have a sucking reflex, this does not appear until after the 32nd week of foetal life and in most preterm infants enteral feeding is started with a probe. With appropriate therapy from a neurologist, the sucking reflex appears more quickly and the mother of the preterm baby can breastfeed him/her.

We are aware of the importance of contact between mum and baby and dad and baby. Can parents of toddler patients stay on the premises of the department?

Mothers of premature babies can stay with us 24 hours a day and participate in the care of their baby.  They can breastfeed - if this is already possible - both during the day and at night. We admit them to the department together with the new-born, because we know that separating a new-born from its mother, in addition to a sick or premature new-born, is unimaginable stress. Last year we opened family rooms: we have 12 places for mothers and these rooms are very popular. There are also social and lactation rooms in the clinic. In November, we are opening a new lactation room, specifically for mothers of premature babies. It was created for those mothers who, for various reasons, cannot stay permanently in the department. Every mum of a premature infant can express breast milk in a comfortable and intimate environment when visiting her baby.

Eventually, the child is discharged home, but still requires special care. How do you prepare parents for this?

We prepare them already while the new-born is in the clinic. Mothers of premature babies become very intimate with us. But most importantly, they learn how to care for their baby slowly and without any stress. They watch how the nurse feeds, how she changes, nurses, they can participate in numerous procedures, so they are educated even before the new-born is discharged, so the discharge is safe and without anxiety.  Furthermore, we run a Neonatology Outpatient Clinic, where we continue to provide specialised care for the neonate.
 

Interviewed by Iwona Kołakowska
Photo by Tomasz Świętoniowski
University Communication and Promotion Office