To premature mothers, sometimes, people are about hysterical

Pilar Guallart (Zaragoza, 1960) and Beatriz Albiac (Zaragoza, 1982) are mother and daughter.But, above all, they are the grandmother and the mother of Paul, a child of a year and a half.Although not for still, he plays with the keys and asks for muffins, he was born with only 660 grams and had to spend 104 days in the Pediatric Intensive Care Unit.With Pablo, two associations were also born: star, presided by his grandmother and Araprem, chaired by his mother.

Why did you decide to found the associations?

Beatriz Albiac.It was when living the experience of an extreme premature delivery and checking the needs that arise and the relationships that were established between the mothers that we were going through the same.We realized that these mothers understand each other perfectly among us;The nurses themselves told us that who would better understand us was the mother of the incubator next door.However, as soon as we leave that environment, it is difficult for us.At that time, pain weighs so much and is so difficult to carry that what we least feels like it is that they take importance to a problem that does have it.In just over a year, we are already 97 associates;The feeling of loneliness and misunderstanding is very frequent and the relationship with other associates begins from difficulty, but ends up being very beautiful because you share a lot.

How costs you understand you?

B.People think that when these children leave the hospital, that's it, the problem is over.And no, what's going, these children require enormous work and effort, have many special needs, even without becoming sequels.They usually tell us that we encourage and...I am very animated.But we carry important wear in therapies, treatments and reviews;It is a difficult day -to -day.For example, it costs us a lot that people understand the isolation that these children need: they are very fragile, they have been born without any defense, the visits prohibit us, we must extreme caution with hand washing, no smokers, nothing of nurseries...It happened to me that what with my three -year -old son had been unimportant snot.This does not understand, they think that we are exaggerated, they treat you hysterically, when we only apply the medical guidelines that have indicated us.

What are those special needs that these babies have?

B.One of the greatest difficulties we are finding is family conciliation because companies do not understand the importance of these children with them.Therefore, they do not see special measures when maternal decline ends, for example.In the health, we want to fight to foster early attention from the sooner as possible, because now there is a lot of waiting list and, obviously, the sooner the little ones are better.And another objective we have is to facilitate residence to parents during the entry of babies.They are very long income and people from all over Aragon, Soria and La Rioja.My son Pablo, for example, spent 104 days admitted, which for any family is too long.They have to look for a rent if they can afford it, there are families that end up sleeping in the car, in the waiting room, in the campsite...We want to prevent parents from looking for life in that situation;The ideal would be to facilitate free accommodations.For an association as recent as we are, it is unfeasible to buy floors in property, so we are trying to talk to authorities to ask if some places could be occupied in public residences.

What else could administrations do to help parents of big premature babies?

B.It seems very positive that the Aragonese law now allows to school some of these children, with very specific requirements, a year later of what would correspond to them in theory for their date of birth, because they can have a maturation delay.In health, the main problem is that, unfortunately, the UCIS are small: although sometimes they come to Zaragoza children from Soria and La Rioja, at other times, some babies here have to be referred to hospitals from other communities because they do not fit.In addition, they allow us parents to be 24 hours with premature babies, but the truth is that the UCIS are not prepared: space is so small that we bothered professionals.

In this also worried that there are no girls so small for these children?

Pilar Guallart.Yes, even when these children are discharged, they usually weigh around 2 kilos.With that weight, the neck neck is left below the shoulder, the walk cart looks like a tank, the belts are loose...It is very sad to see them like this, so small.As much as you are looking for in stores, there is nothing, everything is great.That clothes continually reminds you that your child is not able to fill anything;He is hard psychologically.

What do we talk about when we refer to great premature?

B.The viability limit is 24 weeks of gestation, which are children who usually weigh an average of 700 grams.In my case, my children were twins and the girl was in 600 grams and the child, in 660 grams.More and more premature babies are born and they are getting smaller and.In the Miguel Servet hospital, in 2015, there were between 85 and 100 babies that weighed less than 1.500 grams;In 2016 they have been 116.In Spain, about 29 are born every year.000 premature.

Is there any medical explanation for this increase?

B.Several factors influence.On the one hand, the age of the woman, which, being higher, makes pregnancy more complicated and also that more ovules emerge, which can produce more twin or multiple births.Assisted reproduction also causes an increase in the number of multiple pregnancies.In addition, some diseases or infections of the mother affect.And I would even add the crisis, because there are many women with risk pregnancies that, for fear of losing their jobs, do not take low.Stress is a factor that influences.There is even talk of pollution, but it is something more difficult to demonstrate.

What do you offer from the associations?

B.In Araprem we offer parents continuous accompaniment from the moment they need it, to the extent that they want and how they want.Every Wednesday, for example, we go to Servet and the clinician at 6:30 p.m. to attend to parents who want to speak or have any doubt, without moving anywhere else.We do it because we also detected that the information always came to us by parents who had gone through this before.What if you are not to another father?Do you run out of aid?

What would those aid be?

B.For children who have to be admitted from a week, they add up to maternity every week in the hospital, as long as the 13.In addition, by low weight, if weigh less than 1.500 grams are added another two weeks of maternity leave.These little ones cannot go to the nursery during the first two years;Well, there is a benefit for minor son care with cancer or any other serious illness that we can also accept: to be born with less than 1.500 grams of weight or less than 32 weeks gestation is on the list of serious diseases.Quite chaos and concern we already have in the head to be looking for whether or not it corresponds to us any benefit.Therefore, in the association we have all the information to provide it with the parents who need it.

And in stellar?

P.When Ana died, Paul's sister, two days after being born, Beatriz could be with her and be a mother until the end.But the family, when we entered, we only saw a nest with towels and a baby always with a head band.Afterwards, when my eldest grandson visited Pablo in the ICU, he saw his cup cover, a baby who cannot be touched, inside a box, with a head band.When we see anyone with a bandage, it is normal to ask what happened;A bandage implies pain.Therefore, I kept going around at home.It only occurred to me to prepare colored hatchs, to avoid those bandages.I went to propose it to the supervisor and just that day, she, on the table, had a matt.The supervisor proposed to me to make colored covers for these mattresses.Thus began stellar, with the idea of trying to improve the image that their children's parents see in the UCIS.Later, we also begin to replace the fabrics of phototherapy machines;Before the green operating room fabrics were used and it was a dantesque image.To all premature babies that enter an ICU we give them reins and hatches of premature size, thoroughly lost.So, whatever happens, the family can have a memory.And this week, they have called us the midwives of the Servet asking us for hat.It is the same situation, but visually changes a lot.I cannot change the future of these children or the disease they have, but to get the UCIS to carry a lullab.

Why two associations and not one?

P.Because star is something that I raised as a tribute to my granddaughters and my daughter, it is just a family project.It is different from Araprem, which is an association with other mothers.We work for the same parents and the same children, but in different land.