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– I was sitting by the incubator, reading fairy tales and sending good vibrations. And so for several months – says the mother of Piotruś, who was as small as her hand after birth.
Zuzia and Piotruś were born in the 26th week of pregnancy. She weighed 770 grams, he weighed 880 grams. A child born on time weighs almost five times as much. – I remember they were as small as my hand. I will never forget their fingers, which were as thin as wires – says Marta, the mother of twins. – You cannot prepare for the role of a mother of a premature baby – says prof. Maria Katarzyna Borszewska – Kornacka, President of the Polish Neonatal Society. The sight of a newborn baby connected to a set of tubes and monitoring machines is heartbreaking for parents. Emotions usually associated with the birth of a baby, such as joy and happiness, are often absent in a premature baby – replaced by stress, helplessness, anxiety, and often guilt.
Diseases of premature babies
There was no indication that Marta would give birth before the deadline. She was hospitalized because of an infection. An attempt was made to stop the birthing action all day, but it failed. In the hospital in Warsaw, where she gave birth, there was only one available incubator. This is where her daughter went. The son, who received 2 points on the Apgar scale and was respiratory insufficient, was transported by ambulance to another specialized hospital. Doctors told Marta that the condition of the children was poor but stable. She knew she had to be ready for anything.
Every year, 28 are born in Poland. premature babies whose birth weight is sometimes less than 1000 grams. The proportion of premature babies remains constant at around 7%. Five years ago, as many as half of newborns weighing between 500 and 750 g and one fifth weighing up to one kilogram died. Today, these indicators are much better.
Most premature babies suffer from breathing difficulties. They cannot breathe on their own, because their lungs are still immature, a respirator does it for them. However, long-term oxygen therapy and artificial ventilation can cause damage to the lungs known as bronchopulmonary dysplasia. In addition, premature babies have apnea, i.e. stopping breathing for more than 20 seconds. Premature babies also suffer from anemia, a serious eye disease, retinopathy, and their immature immune system is exposed to many infections. – This is a new challenge for pediatrics. These are diseases that we never had to deal with in the past, because such children died – says Prof. Ewa Helwich, national consultant for neonatology.
Six months in hospital
Marta did not see her son for 4 days because he was in another hospital. After 7 days, the daughter went to the same specialist facility where her brother was staying. Since then, the lives of Marta and her husband moved to the hospital ward. Grandmothers took care of their three-year-old son, and they took turns to come to the hospital. – The doctor told me not to look for any information on the Internet. I was supposed to radiate positive energy because my children needed it. So I sat at the incubator, read fairy tales and sent good vibes. And so for several months – he recalls.
The children underwent laser eye surgery due to the risk of blindness, preterm retinopathy. When Zuza weighed 2 kg, she was discharged from the hospital. She was the only girl in the preterm ward and the only one who hadn’t caught the infection that all the boys got. Piotruś got sepsis and pericarditis. The antibiotic that saved his life made him deaf. It also turned out that she had a growth in her heart. He was transferred to the Children’s Memorial Health Institute. He had to wait a month for the operation because the doctors wanted him to reach a weight of 3 kg. When he was on the operating table, the test results came back and it turned out that he had contracted staphylococcus. It took another three weeks for it to heal.
– It’s been a terrible time. Every morning I went to the hospital to see Piotruś. My husband changed me after finishing work. In the evening I returned to the ward again. It happened that when I left the hospital at 20.00 p.m. everything was fine, and in the morning of the next day I found out that Piotruś stopped breathing at night. Therefore, before coming to the hospital, I called there to find out if everything was fine. When the nurse said the doctor was around, I suspected something was wrong and they wouldn’t talk to me on the phone. I have the impression that for the first year I haven’t slept at all. But the adrenaline was so enormous that I didn’t need coffee or any boosters. At that time, our marriage cemented even more, we would not have managed without each other – says Marta.
Caring for a premature baby
When Piotruś was 6 months old he finally came home. – I didn’t know what was more stressful anymore. When he was in the hospital, he could count on immediate help. Now we are alone – recalls Marta. The first year of life of premature babies is very difficult – additional vaccinations, visits to various specialists: neonatologist, cardiologist, ophthalmologist, orthopedist, ENT specialist.
In Poland, care for premature babies is not the best. You can wait up to three months for an appointment to see a specialist. In addition, these children are 10 times more likely to suffer from lower respiratory tract infections. The most common cause is the seasonal RSV, or respiratory syncytial virus. Every year, it attacks almost 100% of children under 2 years of age, causing illness and death in the weakest. There is an effective prevention of RSV infections by administering antibodies against this virus. In Poland, only 2% of premature children are covered by it, because due to the seasonal nature of the virus, only babies born, e.g. between May and October, qualify for it. – A child born on April 30 will not receive this prophylaxis, but if it is born on May 1 – it will. Meanwhile, it sometimes happens that a toddler who meets the criteria needs this security less than the one who does not. However, a doctor, even on medical indications, cannot bypass these provisions – outraged prof. Helwich.
Parents of premature babies also need to buy a special device that signals their baby’s respiratory arrest. One costs about PLN 1000 and is not refunded. Marta had to buy two. Zuzia suffered from apnea a few times. The device began to howl so that the girl woke up and began to breathe herself. It was a stressful experience for my parents. – Then I constantly thought that the camera could break down and I kept going to check if it was working. I put a mirror under the mouths of the children to make sure that they were breathing – recalls Marta.
Today, Piotruś is two years old and weighs 9 kg. His older brother, who was born on time, achieved this weight at the age of 10 months. All three are doing well. Marta says that if her first child was born prematurely, she would probably be an only child. – It is such a huge trauma for parents that stays in the memory as a paralyzing fear – she adds.
Coalition for a premature baby
According to specialists, a lot needs to be changed in order to improve the situation of preterm newborns. Mortality and the risk of health complications would be lower if such deliveries were performed in specially prepared reference hospitals. The health awareness of women who will become mothers is not without significance. It is also important to organize better care for this group of children after discharge from the hospital. – That is why it is necessary to use all existing means and possibilities to prevent diseases and to make it possible to catch up on developmental backlogs of premature babies as soon as possible – says Prof. Ewa Helwich, national consultant for neonatology. The Polish Neonatal Society in cooperation with the National Neonatology Consultant, the National Fund for Children and the WHC Foundation (Watch Health Care) established a Coalition for premature babies, the aim of which is to develop a comprehensive national program of care for premature children to enable them to have a healthy start and equal development opportunities. Education, development stimulation and rehabilitation as well as infection prevention are the three key pillars of the Coalition’s activities. Specialists want premature children to enter life with as little baggage as possible, have a healthy start, enjoy childhood, and their parents have peaceful parenting.