Ana weighed 500 grams when she arrived in the world, Bruno barely exceeded 1,000. The two were born before their time, before their turn and behind them, like so many other premature babies, there are hard stories of struggle and overcoming. The comfortable crib that their parents had prepared for them at home was transformed into an incubator where, in those first hours, in those first days, These little ones of a few centimeters and a lot of strength fight, in many cases, between life and death.
Her parents define the experience of having a premature child as “the arrival of one tsunami after another, a constant roller coaster in which you never know what is going to come.” Today, they overflow with joy and pride when they talk about their births and what they overcame afterward. On World Prematurity Day, they tell us how they have come through.
Ana’s fragility, premature “extreme”
Ana was at the limit of viability when the Social Security doctor sounded the alarm at the ultrasound at week 24 of pregnancy: the girl was not growing. “They have always sold you how beautiful the moment of childbirth is and that, obviously, you do not live it,” the mother tells RTVE.es. He was afraid that the baby would not be born alive.
Then the fight between the little girl and her parents began. The shock of seeing her for the first time, so fragile and almost “transparent”, in the incubator; the 107 days in the ICU together with other families, sometimes with worse luck; the noise when breathing, “like a washing machine”; cables, tracks and medications; infections and sepsis …
“The biggest problem he had was a pulmonary embolism, but there we even baptized her “Mercedes continues, in a conversation on the phone in which the impetus of Ana, who is now seven years old, sneaks in, playing around.
In Spain, they are born every year around 25,000 babies prematurely, that is, before the 37th week of gestation. Of them, a thousand are brought forward to week 28, like Ana, they are called “extreme premature babies”, according to the definition of the World Health Organization (WHO). Although the proportion is around 8% in our country, the figures are increasing, in part, due to the delay in maternity age. Currently, it is one of the main cause of death in children under five years of age in the world.
Bruno was born in week 33, after his mother, Maria, manifested preeclampsia. “We had a really bad time,” says Antonio, the boy’s father, about the setback suffered in the final stage of pregnancy. What seemed like a routine ultrasound turned into an emergency admission, the fears, the rush, the tests, the races through the hospital …
“Bruno’s strength made us as strong as him. If he demonstrated that struggle, we could only be at his height,” says Antonio, who recounts the indescribable feeling of putting a mini diaper on a baby that seems to be going away to break.
The times and the weight of the fetus are key to assess the risk at birth: if they need help with breathing, nutrition support, protection against infection, etc., as explained by Dr. Manuel Sánchez Luna, president of the Spanish Society of Neonatology and head of the Neonatology Service of the Hospital General Universitario Gregorio Marañón.
“They do not have the immune reinforcement that the mother gives them during the last three months of pregnancy and they have to face themselves with a very, very fragile immune system “, adds the specialist, who sends a message of reassurance to mothers and fathers. “As the years have passed, the number of problems and sequelae has decreased, and also their severity,” he says. For this reason, premature babies must receive care in specialized hospitals, where problems that may arise are monitored at all times.
Thus, Bruno was monitored for a month admitted to the hospital and, luckily, “everything went well”: the tests, its development and even the delicate operation of a hernia. Today he is a healthy child, at best, a little smaller than his classmates.
The “fear” of the aftermath
Ana and Bruno are two healthy children but not all have the same luck. The long-term sequelae They are among the main concerns of mothers and fathers of premature babies. In this regard, Dr. Sánchez Luna mentions the respiratory conditions, in the event that the lung finishes developing when the baby is outside the womb. “It does not have to be especially serious, however, it is there. The limitation of the function of the lungs can persist in many cases throughout life,” he says.
In this sense, Mercedes, who had to stop working to take care of her daughter for the first three years, acknowledges that they took her home “in fear” upon discharge. “Ana could not go to shopping centers, or on public transport, or be in a bar, or with anyone who had sneezed,” due to the risk of pneumonia, bronchitis and bronchiolitis. However, of all that currently only asthma remains.
Antonio tells how in the first weeks Bruno’s overprotection was the main priority. If the arrival of a baby involves receiving visits at home, these were limited to the maximum so that the little one would not have any complications. In pre-ndemic times, Bruno was already surrounded by protective masks to avoid any contagion. Routine visits to the hospital were his first walks.
The neurological sequelaeOn the other hand, they are the ones that can most affect “the social insertion and quality of life of the child”, because they affect their cognitive development and psychomotor skills, according to the neonatologist pediatrician Sánchez Luna. But in recent years, the knowledge of these damages has also advanced and has led to preventive treatments (steroids, magnesium sulfate) and rehabilitation therapies.
Early care, “the great unfinished business”
Rehabilitation is handled by the so-called “early care” services, whose regional public offer is as “crucial” as it is insufficient, according to the Spanish Association of Fathers and Mothers of Children Born Prematurely (APREM).
“You leave the hospital where you have had the best resources and, suddenly, if you have money, you can pay for your child to have early care until they give him a place and, if you don’t have it, you don’t have early attention ”, denounces the president and co-founder Concha Gómez. Early care is “the great pending issue” in Spain, sentence, but developmental problems, conduct disorders or attention deficit do not allow delays.
The APREM emerged in 1999 by a group of parents of children born prematurely, who felt “very alone” when going through this very “complicated” situation. “People did not know whether to offer me their condolences or congratulations, because they were very vulnerable children,” recalls Concha Gómez, who gave birth to two babies weighing less than a thousand grams each. Consider that Spain is “lagging behind” in matters of accompaniment to families and humanization of treatment in health services.
Who accompanies the parents?
For this, the psychologist Evelyn Cano created ‘Hug Project’, aware of the “significant lack” of emotional support “at the crib.” During the research for his thesis at the Gregorio Marañón Hospital in Madrid, he delved into the needs and fears of parents, as well as the tension of the medical and health professionals involved.
“Mothers break down when they are discharged and have to leave the hospital without their baby in their arms. It is a very hard moment that I anticipate and in which I am there ”, Cano illustrates. Now, impart training for hospital teams nationwide and defends the figure of “link between parents and health personnel.”
In his experience, if there is psychological support, “upon discharge of the children, the parents have minors have lower levels of stress and anxiety, which has repercussions on the development of the child. ”However, he regrets that the resources never arrive to attend to the emotional dimension of the problem as one more unit within the hospitals.
And two happy endings
But the story of our two protagonists has a happy ending. Mercedes says that Ana spent her days in the ICU with a shirt close to Betis that her grandmother gave her at birth. Hope and determination were manifested, this time, in green and white and the little girl came forward, like many other boys and girls born prematurely in Spain. “They are all real fighters,” says the mother. Also the few who cannot survive.
For his part, Antonio assures that the month in which Bruno was admitted to the hospital was like a “Intensive course on how to take care of it, take it, feed it.” With excitement and optimism, remember all that as “lucky.” Today, like Mercedes, she only has words of thanks to the doctors and health workers who attended them.