This is the first time that in "Mujeres Alawa" we present two women in the same space. They are the same light, but two flames clearly distinguishable from one another. Their lives are now linked forever, but each one will have to follow an uncertain path that she has yet to figure out. Both have their story to tell, one does so with a clear and transparent voice, the other with a silence that fills everything with content. We draw this imaginary curtain, so that you have the privilege of knowing from the inside the story of María and Loreto, a mother and a daughter who have had the courage to live a life that no one had bet on living.
We are at Maria's house, married to Israel, and together they are the parents of 5 children, Mateo, Israel, Marcos and David, and the youngest: Loreto, a very special girl. What makes her so special?
M- Quite a few things, it makes him special. To begin with, we made a pilgrimage to the sanctuary of Loreto in Italy, where the house of the Virgin is kept, and we asked her for the grace to have a girl. After four boys, the truth is that we really wanted a girl.
I got pregnant, and with a girl, but at 12 weeks I have a hemorrhage, they discover a hematoma, and in the review of that hematoma, at 16 weeks, they tell me that the baby has a serious brain malformation and that she has very little life expectancy. They explain to us that it is incompatible with life, that they normally die before childbirth or during childbirth, they do not survive 6 months or 1 year, depending on how serious the malformation is. The malformation is called holoprosencephaly, this very rare word means that in embryonic development, when the brain has to be divided into the right and left hemispheres, as in the case of Loreto it has not been divided, there are cases in which it is not divides absolutely nothing, a little or a little nothing else. So in the end you have a poorly developed brain, that has many consequences. A facial malformation, a series of things that you read all the pathologies you can acquire and throw your hands up, the truth is that it is quite striking.
So they tell me that it is a case in which "therapeutic abortion" is recommended. At that moment, the truth is that I did not hesitate. We said: we are going to give him the hope of life that God wants. With a lot of fear, but this was clear to us from the first moment. I remember that I left the office alone, because my husband couldn't come in because of COVID and I called him and said: "darling, this has happened and it's a girl", because at first they didn't tell me what it was... I said: "what is it, what is it?"
We said: we are going to give him the hope of life that God wants. With a lot of fear, but this was clear to us from the first moment.
María
From the beginning, my husband wanted her to be called Loreto if she was a girl, and I told her: “she's a girl, and she's going to be called Loreto.” Because if the Virgin has commanded us, then she should take care of her, I can't deal with this situation.
And well, the pregnancy progresses surprisingly, although with many problems: bleeding, placenta previa, more bleeding... and I rest. Every time we went to the weekly ultrasounds it was worse, worse and worse: "the brain is regressing, the little it had is self-destructing." At the end they told us: “it is very likely that we are no longer talking about 6 months of life, no, we are in seconds”, we went from 6 months to seconds of life. It wasn't enough, for me it wasn't enough. At that moment it's like: "give me a little more, let it be a minute or two more". My goal was that my children could at least meet her.
She was born before her time, quite a bit before her time, almost two months before her time, obviously we still had less hope, because if it's a full-term pregnancy, well, still, but of course, immature lungs, many things, in the end you have a premature baby, a great premature with a very serious malformation.
At the hospital I remember that they were very respectful, it is true that throughout the pregnancy until week 20, which is when you can legally abort in Spain, they kept reminding me: "Do you want to abort? Think about it, things are like this, still you're on time." There was a moment when my husband already said: "we are not going to change our decision, don't ask me anymore, every time I come here every week you are going to ask me, we don't want you to ask me anymore, we are clear that The life and death of our daughter is in our hands, many things about our children depend on our hands, but not the moment of birth or the moment of death”.
That backpack, which I call, is a responsibility and a weight, and it is a backpack that in my case I left to God. I said: “well, then you do what you have to do”. It's good, it's an act of trust and an act of faith, because in the end I want to control even the moment of life and the moment of death of my children, but I can't, that's not in my hands.
And then we come to a hospital room with a newborn girl. Whats going on there? Because it seems that no more surprises can happen, but there are still surprises in this life.
M- There are still surprises, yes. Before Loreto was born, they ask us what we want to do when she is born because we had very little time, we decided that the doctor would pass her on to her father so that he could baptize her, our goal was to do what we could do in those few seconds, and that For us it was baptizing her, giving her the best we have, which for us is faith, and being able to open the doors of heaven for her and that's it. And if we had to have a daughter in heaven and it was her mission, then go ahead. Loreto was born by emergency caesarean section, because I had several hemorrhages, and just as she was taken from her, they passed it to my husband and she baptized her. It was a very beautiful moment, because there was a wonderful silence in the operating room.
It was a little difficult for the girl to breathe, you saw her struggling, and that moment of struggle, of “I want to live”, turned into minutes, she recovered a little of the circulation she had and was able to breathe on her own. And the minutes passed and a few hours began to pass and Loreto was still there, with us. They told us: “do you want to feed her?” "Yes of course, yes, we are going to feed her, right?" "Can the brothers come to see her?" When my children left the hospital, I said: "That's it, Lord, you have fulfilled it for me, what you had to do for me you have done." And she kept me calm.
And that first night that we were in the room with the girl, even though she was so premature, she should have been in an incubator for neonates, but they had left her to us because they were only going to be a few hours or a few seconds at first. We noticed her as if she was cold, with a "moan" and we called the neonatal nurses, wonderful nurses, and they told us: "man, this girl should be in an incubator."
If I had been alone at that moment Loreto would not have moved from above me and probably would not have lasted that night, but my husband was there and then I looked at him and he said: "María: if we think from the outset to give our best our daughter, what Loreto needs right now is an incubator, they have to take her away and she has to spend the night in an incubator and that's it”.
Well, thanks to the fact that she had that lucidity that I did not have at that moment, Loreto is here with us. It is true that the woman carries the pregnancy and bears its consequences, but the one next to her is also there and is very necessary, it is a job for two, it is not I lean on each other, no, in the end it is: let's go two in the same direction. We have suffered together, we have laughed together, we have had to break the news to our children together too, in the end it is a team.
"It is true that the woman carries the pregnancy and bears its consequences, but the one next to her is also there and is very necessary, it is a job for two"
What happened to his malformation?
M- The diagnosis continues to exist, this is not a medical failure, sometimes many people say that Loreto is a miracle, but it is not a miracle of the type she had this and now she no longer has it, no, Loreto had this during her pregnancy and he still has that diagnosis, he still has holoprosencephaly.
What has happened? The doctors have been finding the priority for her, for her brain as well, because indeed we have holoprosencephaly that has no cure or treatment, but also derived from it we have hydrocephalus. That hole in the brain has filled with cerebrospinal fluid, we are going to help drain it to make it easier for the brain to expand a little.
They put in a shunt valve and the brain has been expanding little by little. And then, the cranial sutures are closing and this is not molding the skull well, we are going to open them, we put a cap on it and we are going to see if that way we make it easier for the cerberus. The doctors have also been hitting the important point to treat Loreto.
So the holoprosencephaly is still there, but the brain is plasticity, so we are going to play in our favor with that plasticity and we are going to make it easy for them, we don't know what will happen, I don't know how Loreto's brain is going to react because well, the disease is one and then the individual is another, and Loreto sometimes skips protocols and skips stories.
“Loreto does nothing special except breathe, eat, sleep, I mean, she doesn't give big talks or make speeches, no, she's a baby, but only with her desire to live, and her way of saying: life is worth it. , because it spreads that joy and that way of life that is so necessary right now "
The protocol that is skipped is that it is alive. We spoke at the beginning of the interview and you told me that the prognosis had been reduced to a few seconds to live. And now Loreto, how long does she have to live?
M- Well, six months, yes. It is true that it surprises, Loreto surprises. It has been an accumulation of many things and God has taken great care of us, through the work of the doctors, all the health personnel and also, as people say, the love he receives from his family and that desire to live.
People tell us: "it's because he has life in his eyes, he transmits life", with that look he touches hearts. It is something that is beyond me, I mean, of any child you are very excited to be told: "you have a very good son, you have a son who is helpful, that they tell you the good things, but that they tell you:" your daughter It's a miracle or your daughter helped me get up this morning because I have depression or I'm thinking of having an abortion and now after meeting Loreto I've reconsidered it”. It's like wow!, wait, Loreto is a baby, Loreto doesn't do anything special except breathe, eat, sleep, I mean, she doesn't make big talks or make speeches, no, she's a baby, but only with her desire to live, and his way of saying: life is worth it, because it spreads that joy and that way of life that is so necessary right now. That someone tells you: "hey, it's worth living", even if there are a lot of problems, because let's face it, it's not nice to have a girl who doesn't know what will happen to her tomorrow, I don't know if he will be able to walk, talk, I don't know. Not having something insured makes me live up to date, makes us live for the day, today, what you have is today, so enjoy it.
You use the phrase “life ends up making its way”. It can be said that an apparently "death" experience becomes a surprise. As a mother, how do you live that?
M- Sure, you are experiencing a pregnancy, my husband explains it very well, it is “waiting without hope”. We decided to bet on Loreto's life, despite all odds, but you don't expect to receive the final gift of a pregnancy, you don't prepare a crib, you don't prepare clothes, you have no illusion, no illusion, zero. And at the moment when you expect to see death, accompany your daughter to heaven, which we thought was our mission, accompany her for those seconds, that she was not going to give up, suddenly things change. Loreto breathes on her own, she eats on her own, she makes her way through this life without you doing big things, she doesn't even need oxygen, nor does she need a nasogastric tube to eat. At the hospital they told us: "it's that she's better than 90% of premature babies, you've taught us a new way of treating a premature baby, you don't always have to follow the protocol, because she skips it."
So that moment when life opens up is something very big, and also you don't control it, which is what attracts the most attention, it's like “well, what now?”, we would say to the doctors: “ and what are we waiting for?". And they told us: “we don't know, it's out of any protocol, we have to see what the girl is asking for and we're moving forward, now we're trying this, now we're trying this other and then we'll continue like this. So we don't project much more, today she is fine, today she is stable, we have a lot of doctors, a lot of stories, but we see her happy, we don't see her suffer and we are enjoying her a lot.
“That moment when life makes its way is something very big, and besides, you don't control it, which is what attracts the most attention”
And what about the brothers?
M- Well look, the brothers were very excited about the news of a new pregnancy and for us the hardest moment, I think that even more than receiving the diagnosis is giving them the news. For us it was a very hard moment, I think perhaps the worst of my entire life. Of course, because you are telling your children: "you are going to have a sister or not, because we don't know if she will even endure the pregnancy, that she is going to have a very serious brain malformation, we don't know how long she will live and We don't know how it's going to be." This, within the evolutionary capacity and age of each one, since they carried it as best they could. With a lot of suffering they too, sometimes with anger, I told them: "you are allowed to cry, you are allowed to be sad and you are allowed to be angry, you can get angry with God and tell him: I don't understand it, I don't understand it, explain it to me, even if it isn't." now, but please explain it to me."
We were very honest with them all the time, they always asked "how are you doing?", in each ultrasound, "well, it's still the same". They have also been very attentive at the end, physically I was not well and they have also taken care of me. Then the moment arrives when Loreto is born, they can come to see her, and she continues to live, which was not expected. Then suddenly they tell us: “you have lied to us”. "Why have you lied to us? Why have you made us suffer before our time? Loreto is fine now”. So we tell them: “of course, guys, we haven't lied to you, neither we nor anyone else expected this to happen, we haven't planned it and it hasn't been thought of, far from it, quite the opposite”. So we medically explained to them what was happening to Loreto and the eldest of my children, who is 12 years old, told me: “but mom, you can't live without a brain”, and I said: “ah, well, you tell Loreto and you tell the doctors because I don't understand anything either”.
Because I was the same as them, I was saying: “today, let's see if we continue today, tomorrow, the day after, that's it, but we didn't consider much more because everything was new, everything was new. So now they are crazy, she is the princess of the house, they take care of her a lot until the 4-year-old, who doesn't seem to know anything, and she told me: “well, this was Jesus, eh, the one who told us is leaving has been Jesus”.
With which I believe that this is being for them a very strong and very rich experience that life is not in our hands.
“Beauty is there, in wanting to truly live with joy, enjoying life that sometimes all the day-to-day nonsense hides that beauty from us and doesn't let us see further. We are going to focus on what is important, which is to live life fully, not just putting out fires.”
It could be said that there is a subchapter in this story that could be titled “Loreto influencer”. What happened to the Instagram account?
M- I always say that she is the influencer, I am the medium that makes it possible for people to reach her. When Loreto is born, my husband asks me if I should publish the birth of Loreto... our accounts were tiny, very tiny... and I told him: "you are going to publish today that she was born and maybe tomorrow that she is gone." “Yeah, but she was born today, right? Let's say that she was born today. People have seen you pregnant and suddenly not anymore, I want to publish that she is with us today ”. Voucher.
And suddenly, it is true that through the godparents of Loreto, of Irene e Israel who asked for many prayers for her, people were learning the history of Loreto. We were publishing a little about evolution, also because we felt a little responsible for giving voice to this, to say, in this case, life has won. It's a beautiful story, it's not a death story, closely linked to her, but it's not a death story, it's a baby's life story.
What we have found on social networks is the vast majority something super positive, many people who pray for her and for us and who have felt that support; people that Loreto really touches their hearts in a strong way and they tell you, "I'm thinking of having an abortion, but Loreto is changing my idea", "I'm in a depression and today I got up after I don't know how many months out of bed ”. And you say: “My God, this is getting out of hand”, I don't do anything, I mean, I don't do anything more than put a photo of my daughter on a social network and say “hi, how are you? we're fine”, she does the rest through a screen. Well, I don't know why she does it, but it's clear that she has some mission in this world with others, with us the first to be the lucky ones to have it, but with others as well.
"Loreto probably does not have a perfect life or what we understand as perfection or what we understand as beautiful, but she wants to live it and wants to make it beautiful and we are going to help her do it"
María
Many fears have emerged from minute one of the history of Loreto. How do you live with these media? How do you handle it?
M- When something of this type happens to you, it is true that we have a child with another disability, who discovered it after birth, you come with some homework done. So from that time we learned that not everything is always fulfilled, that is, they tell you: “your son has this, all this is associated with it”, it is not always fulfilled. I suffered a lot before my time with my second son, and with Loreto I try not to suffer before my time. It is very difficult not to imagine what could happen next, not to imagine that perhaps she could stay in one of the operations in the operating room, because she is your daughter, she is not pleasant, there is a lot of suffering behind her, that is, nobody likes to have a sick child, you want a perfect, stupendous, wonderful child who does not have any problems or give you any problems in life in general, not only on a physical level of illness, but even on a psychological level. But for me in particular, faith helps me a lot. I believe that God has a plan for me through Loreto and God has a plan in Loreto, with Loreto, and generally from experience God's plans are better than what I do for myself. So faith helps me a lot, it has also taken great care of us through people who, in a moment of serious suffering, have come and told us what we needed to hear, "hey, look, trust in the Lord" or "go before the Holy One who what you need is to talk to him a bit.” So faith helps me not to ask myself so much, not to be so righteous and not to ask myself so much why this to me, why to my daughter, but why, to give meaning to this, I believe that this story has meaning , it has meaning for me, for my husband and my children.
I can't tell you that sense right now and maybe I won't discover it until I die, I don't know, I'm glimpsing something, we see something now little by little of what Loreto is changing with us, but I think that everything has a meaning and that helps me. I explain it a bit to my children in a somewhat temporary line, I tell them: look, with Loreto, or with any child with an illness, disability or suffering, there is a part that is our responsibility: we take care of it, we love it We feed her. There is a point that belongs to the doctors, I cannot go into the operating room to operate on my daughter, that responsibility is theirs. And there is another point that for me is the work of God, the hand of God already enters there. And that timeline is bidirectional, that is, God can also use doctors to carry out his mission, carry out his plans, and in a family to carry out his mission, carry out his plans with this person, which in this case is Loreto.
So for them to understand a bit that we got to a point, that we have to leave the rest to those responsible for it, and there is a part that is from God and I trust that, and it is not giving me bad results for now.
At the beginning of the interview I told you that there is a phrase by Dostoyevsky that inspires this section and says: "beauty will save the world", this is about beauty, this section, this interview, is about beauty, where would you say it lies? the beauty of Loreto and where lies the beauty of this story, which is yours?
M- Yes, Loreto is a life story, in the end life is beauty. Loreto is a story of life, but it is closely linked to death and suffering due to illness, a short life expectancy, and then to the deaths of the spirit, of their parents, of their siblings, of the people who love us, who she loves him, that we suffer with her for what may happen, more than for what she suffers. So I think the beauty of this story is in life itself, that's it, it's worth it, even if you don't have a perfect life. Loreto probably does not have a perfect life or what we understand as perfection or what we understand as beautiful, but she wants to live it and wants to make it beautiful and we are going to help her do it, make it the best life we can give her. as far as we can, right? The beauty is there, in wanting to truly live with joy, enjoying life that sometimes all the day-to-day nonsense covers that beauty from us and does not let us see further, we are going to focus on how important it is to live the life but fully, not just putting out fires.
“I believe that God has a plan for me through Loreto and God has a plan in Loreto, with Loreto. And generally, from experience, God's plans are better than what I do for myself."
María
I deduce from what you tell me that there is great enjoyment with your daughter.
M- Now yes, I thought I was enjoying life, I really did. But Loreto has taught me that I was focusing on trifles, and that's what made me suffer, he didn't "come to this, I didn't come to this other, I have to do this..." With Loreto I had to stop, I had to stop a lot, I have been on rest during the pregnancy, I have had a different delivery from the previous ones and I had to spend hours in the hospital with her. So we have had to stop and say: okay, and what is the priority? Is the priority is that the house is magnificent, stupendous and marvelous? Is the priority our work, our working life? No, the priority is our children, our family and right now Loreto's life, which we can all enjoy together. We have really enjoyed the first few times, maybe it is the first and only bath, maybe it is the first and only bottle, maybe it is the first time that we all go for a walk in the park together.
Living like it's everything the first few times is very exciting. I thought so, that before, I was enjoying myself and that I had enjoyed myself, but now an alarm does go off and you say “careful, you are focusing on something else…”. My husband and I often say to each other: “we are going to prioritize the day-to-day agenda” and perhaps the most important thing about the day is to have dinner together on a quiet day.
María, thank you very much for your generosity, for your honesty and also for allowing us to live and drink a little bit of your story. Thank you very much, Maria.
M- Thank you, thank you.
ado baise
Thank you for the answer!