Interview: Valeria has Down Syndrome and her mother loves her that way

Today we speak with Blanca Antón Infantes, mother of Valeria, a premature girl with Down syndrome who was operated on last Christmas for a heart disease when she was about 6 months old.

MH: Hello Blanca, I am glad that you have agreed to grant us this interview, your story touches me closely and I really wanted to share it with others.

White AI: Thank you, the truth is that I have never done this, so you will tell me what you want me to explain.

MH: Well, what we really want to know is Valeria's story, from the beginning, how was the pregnancy, how did you know about it, the reaction of the family, etc.

White AI: I found out that I had Down Syndrome within 2 hours of having the cesarean section.

I found out about the pregnancy when I was approximately 6 weeks old and well everything was going normally, except that I did not notice the famous strong kicks. But being a newcomer, I didn't think it was normal either, I thought I would notice them later.

Echoes 4D to see her, all very well, a very quiet pregnancy. But when week 33 arrived, they saw that Valeria was quite low in weight and they repeated an ultrasound the following week. In a week nothing had increased, and they worried.

Week 34 and things remain the same ... 1,500 kg and little fetal movement, I began to notice it very little, so I was admitted for 34 + 5 for CIR, (Delayed intrauterine growth) to keep me under control, and see "what they do." That same night they make me monitors and leave me on an empty stomach for what might happen the next day ...

This on Friday, May 19, on Saturday, May 20 at 9 in the morning they put me back on monitors and before they finish, a boy dressed for the operating room enters and tells me: Come on, pretty, we're going to caesarean section, yes it does not grow inside it will grow outside.

I thought I was scared to death, I ran to my husband and said only: "Come let me open, run come let me open." I entered the operating room crying and trembling with fear (I think I never trembled with fear like that day)

At 10:40 I hear her crying on the way out, they let me give her a kiss and they take her running to incubators.

While in resuscitation they let my husband in and I see him as white as lime, something is wrong. He asks me how I'm doing and I tell him I'm fine, but how is the girl? He tells me fine, but they think he has Down Syndrome, they are going to do some tests.

At that moment my answer was: Okay. And as if nothing, I do not know what happened to me that I did not react.

Well, the next day we go back up to see her, and they let me hold her in my arms in skin to skin, being with her in a kangaroo, I with tears in my eyes thinking that it was a mistake, how my girl would have nothing if all tests went well. A nurse arrives and tells me:

• You're Valeria's mom, right?
• Yes.
• I'm the one who saw that your girl had DS.
• Well, they told me that it could be an error, that it is very small and it is too early to confirm it without proof.
• (with a smile on his face that hurt me horrors, he answers) Ha, it would be the first time in 20 years that I was wrong.

I burst into tears, hugged her and burst into tears. After 2 days, a new blow. They tell us that he has heart disease and that he will have to operate on it when he reaches an age and reaches a weight. I could not believe, 48 hours of maternity and I only took sticks.

It was 45 days in neonates, during that time, 3 weeks after admission, the results of the karyotype arrive. Confirmed positive for trisomy 21. My girl had Down Syndrome. After several anxiety attacks, and days crying looking for "guilty", saying why to her, why to me, why to us, my husband, her father, she opens my eyes. Has SD, SO WHAT? Nothing is fixed by crying and what you have to do is see what the girl needs. After a month I was beginning to see life differently, to take it very differently.

MH: The more you know you, the clearer it is that you are a very fighter woman.

White AI:  Actually I thought I was dying on the day of confirmation of the diagnosis, I swear, I thought I was dying there. I was never so scared, I don't know why, but I was shaking like a leaf and I only knew how to say: "I'm scared to death, I'm scared." But hey, now it happened 100 times more. I'm telling you this and crying at the same time ...

MH: Think that we do this so that people realize that there is nothing wrong with one more chromosome. That there is no need to be afraid. And as long as the crying is of excitement and joy, or that at least you discharge all that anxiety, welcome.

White AI: It's because I remember all that, it was very hard, you never think it could happen to you.

MH: Our intention is that people know that, that there really is no way to avoid it and that it is not a punishment.

White AI: I'm not really aware of having had a daughter without DS, because before I saw her, they had already told me that I had it.

MH: So, tell us what it's like to have a daughter with DS.

White AI: Well, for me she is special because she is my daughter, I don't see a girl with DS, I just see Valeria.

We went through a very, very hard time which was her heart operation, because the Down have a very high percentage of having heart disease and she has it. It is already operated and is very well, but it is necessary to pass it.

She goes to Early Childhood Care, physical therapy and stimulation classes, because they tend to have muscular hypotonia and you have to "help" them a little. Because of her very low birth weight, she lags behind other children in terms of growth, development, etc. But within his prematurity and Down Syndrome he is doing well.

We must understand that they need support and reinforcements, and not take it as something "bad", if not quite the opposite, it is for them, so that tomorrow they have the same life and autonomy as a person without DS. It has its reinforcements as a child can have private classes and that's it. All I want is for Valeria to be self-sufficient.

Many people think that it is different but even though I am a newcomer, I do not see that my girl does something different from other babies, she laughs, cries, plays and makes us happy every day like any child does his parents, each advance is a party.

Before I got pregnant I always thought that if I came up with a problem I would have an abortion, now, every time I look at her I think I would have missed having her and I can't forgive myself.

MH: In this life, everything happens for a reason, perhaps Valeria had to be born to teach you something.

White AI: The truth is that yes, you start to value other things, you see important things that you didn't before and vice versa.

MH: Well, actually, I think that with all this testimony you have answered all the questions that we wanted to ask you, without ever having asked them. Do you want to make a special mention or do you have something to be thankful for?

White AI: Well, the truth is that yes, I would love to be able to thank the entire team of pediatric cardiac surgery at Hospital Universitario de La Paz. Especially Raúl Sánchez, Juvenal Rey and Luz Polo. They were personally the ones we had dealings with and any word of thanks falls short. Thanks a million for what you did for our little girl.

Thanks to the REA / UCI team for treating the children and parents so well, you made our stay there as pleasant as possible within what it is, you are wonderful.

To the mothers of Down Asturias, for that great support that we find in them.

And Cesar Daniel Cuervo García, Valeria's father, my battle partner in this adventure. Because without you I would have sunk, you helped me not to collapse and see clarity where at first I only saw darkness. You were, you are and you will be a fundamental pillar in our life.

To Alberto and Sonia, my girl's "fake" uncles, who were at the foot of the canyon since she came to the world and continue to be.

To you for this interview.

And last but not least, to the entire facebook group MALASMADRES, they were without a doubt the greatest support I could have, wonderful.

MH: Thanks to you Blanca, for being who you are, for bringing your child forward, that wonder, that as you and your friend Susana Pardillos say "you did with so much desire that you put even one extra chromosome on her." Valeria is very lucky to have you as a mother, I hope that everyone removes the blindfold and sees that being different does not make you less than another, it only makes you different.