Victoria & Me

Maria de Fatima Campos, ARPS, ABPPA

Victoria y yo

Este proyecto fotográfico documenta los tres primeros años de vida de mi hija que tiene síndrome de Down


Ella es mi hija y la quiero mucho.


Probablemente como cada futura mamá, me sentía orgullosa, bien, hermosa y muy saludable, pero con algunas preocupaciones sobre el futuro. Estar embarazada era como un sueño hecho realidad para mí, porque pensé que nunca iba a tener un bebé. Incluso hoy en día a veces la miro y pienso, es real, tengo un bebé! Yo estaba llena de sueños y planes para el bebé que crecería inteligente, saludable y muy exitoso. Por supuesto tenía la esperanza de que yo estuviera esperando un bebé normal. Yo siempre le pedí a Dios que me diera un bebé con buena salud, física, mental y espiritualmente, que pudiera también creer en él. Porque yo creía que Dios me daría el niño correcto, así como siempre lo deseaba. Pensé que me merecía un niño perfecto.


Hablé mucho con ella durante el embarazo y cuando ella me daba una patada yo acurrucaba sus pies, o lo que yo pensaba que eran sus pies. A veces durante la noche solía pedirle que se moviera porque estaba preocupada y no segura de que ella estaba bien.

El día en que ella debería nacer me levanté por la mañana y no podía sentir Victoria moviéndose, sentí que algo no estaba bien.

Pensé que tal vez fuera porque el día anterior lo pasé sacando autorretratos de ella en mi barriga. Me había agotado tanto que al final no pude ni moverme para devolver la cámara a su sitio.

Preocupada por su silencio y la ausencia de movimiento le pedí que me respondiera pero ella no lo hizo. Llamé al hospital y les dije lo que estaba pasando y las enfermeras me dijeron que esperara porque estaban demasiado ocupadas. Conociendo a mi hija muy bien decidí acudir a mi médico de cabecera el cual me mandó directamente al hospital. Fui con la esperanza de que todo estaría bien. Tenía un plan para el gran día que incluía un parto en el agua al estilo de los indígenas de América del Sur. Pero después de todas esas preparaciones el medico vino y me dijo ahora que el corazón de mi bebé estaba en peligro y que tenía que nacer inmediatamente por cesárea.

Sólo siete minutos más tarde, Victoria me estaba mirando con un ojo abierto. Al instante que vi sus ojos un pensamiento me vino a la mente. Me pregunté si ella tendrá síndrome de Down, pero de todos modos en aquel momento durante el procedimiento quirúrgico no podía pensar con claridad y rechacé la idea.

Después de que salimos de la sala de operaciones la comadrona que había asistido al parto vino y me dijo que quería tener a mi bebé examinado por un pediatra porque sospechaba que Victoria tuviera síndrome de Down. Un médico apareció y luego otro y ellos confirmaron que ella lo tenía.

Cuando me quedé embarazada había decidido que si mi bebé sería una niña me gustaría llamarla Victoria porque es un nombre sencillo y fuerte, y sólo un niño victorioso podrá sobrevivir en este mundo salvaje. Pero cuando me dieron la noticia y empecé a observar aquel pequeño bebé con síndrome de Down y posibles problemas del corazón, me sentí desolada. Pensé tan irracionalmente, este bebé no va a sobrevivir, voy a mantener este nombre para otro, sentí que no era un nombre adecuado para un bebé tan débil. Estaba muy decepcionada, enfadada, no pensaba con claridad, recuerdo haberle dicho a mi marido que podríamos intentar tener otro y que yo podría hacer "el examen".

Cuando empecé a darme cuenta de lo que pasaba me puse muy trastornada, no lo podía creer y pensé que Dios había cometido un error, ¿cómo podía hacerme esto? Probablemente, igual que muchos padres, nunca pensé que ese tipo de cosa podría pasarme a mí.

Aquella noche, la comadrona llegó y me vio tan trastornada, llorando sin consuelo, que me preguntó lo que me pasaba y yo se lo dije. Ella me contestó que no le parecía que Victoria tuviera síndrome de Down, pero aún si ella lo tuviese, y yo no la quería, ella sí la querría. "Se ve como un bebé precioso y estoy pensando en adoptar a un bebé con síndrome de Down, porque mi vecina tiene uno que es el niño mas adorable que jamás he visto", dijo.
Llena de euforia, me sentí muy optimista de que ella no lo tenia, de que los médicos hayan cometido un error, y esperaba que los análisis de sangre me lo demostrasen.


Richard, mi marido, pareció aceptar las cosas y empezó a averiguar qué se podría hacer a continuación para ayudar a Victoria. Él fue muy positivo y me animó. Ha tratado de aprender todo lo que puede, no sólo para ayudar a su hija, sino también para dar apoyo a otros padres que están en la misma situación en la que estábamos entonces, a través de la Asociación Síndrome de Down, Subdivisión de Londres.

El tiempo en el hospital fue muy concurrido y ruidoso, con los diecisiete bebés llorando en la sala de enfermaría, excepto la mía que era muy tranquila. Muchos amigos llamaron y algunos fueron muy optimistas, diciéndome “no te preocupes, ella va a crecer con nuestros hijos”, y algunos fueron muy alentadores, no veían que tener un hijo con síndrome de Down era razón alguna para sentirse como en el fin del mundo. Algunos llamaron por teléfono y lo primero que preguntaron fue si no se le ofreció "el examen", pero otros amigos me parecieron aún más preocupados que yo misma. Recuerdo un buen amigo preguntándome cómo pudo suceder esto a mí y llorando por teléfono me dijo "Eres tan fuerte, tan saludable, tan perfecta". Algunos e-mails enviados me decían que hay ángeles en forma de bebés, que son muy especiales, que debía dar gracias a Dios por este regalo, pero otros dijeron cosas tontas como que harían una caminada y quizás podrían ser capaces de hablar. Otros nunca han llamado o enviado una tarjeta, es de suponer que no sabían qué decir...


A medida que el tiempo en el hospital pasaba, todavía culpándole a Dios por su error, muchos pensamientos vinieron a mi mente tratando de encontrar una respuesta a mis preguntas, una explicación para aliviar mi dolor, y me puse a pensar en cuando me había quedado embarazada. ¿Qué tipo de errores había cometido para tener una hija que tiene síndrome de Down?, ¿qué he hecho yo para merecer esto? Algunas veces me sentí tan culpable porque sabía que estaba en una categoría de alto riesgo, ¿debería haberme hecho "el examen"? Sin embargo, yo no habría podido permitir que algo dañara al bebé en mi vientre, lo cual "el examen" podría haber hecho. Yo sólo quería protegerla, y ahora me sentía como si hubiera cometido un delito. Me sentía irresponsable por no aceptar "el examen" que habría podido determinar si mi hijo tenía síndrome de Down.
La amniocentesis es una prueba invasiva que consiste en insertar una aguja en el útero para extraer una muestra de líquido. Conlleva un riesgo de aborto involuntario o un trastorno físico o mental en el caso de un error quirúrgico, y pensé que no tenía el derecho a jugar a la ruleta rusa e impedir que ella diera su contribución al mundo, de que ella tuviera una oportunidad para mostrarnos lo que tenía que ofrecer. Como Cristiana que soy creo en la vida.

En aquel momento cuando estaba en estado de choque pensaba totalmente irracional. Empecé a pensar si se debía a que yo sólo comencé a tomar ácido fólico después de quedarme embarazada, o porque me había agotado demasiado, acababa de regresar de Brasil y trabajaba muy duro día y noche para asegurarme de terminar mi libro antes de la llegada de Victoria. Todas estas preguntas me vinieron a la mente.

Después de dos días por fin logré amamantarla. La cogí muy cerca a mí, cara a cara - ojo a ojo, le hablé en portugués y la alabe, como siempre lo hacía durante el embarazo. Yo soy tu mamá. La llevé con mucho amor, voy a cuidarle y ayudarle a alcanzar todos sus objetivos, todo lo que quiera, porque la quiero. Abrió los ojos y me sonrió y me enamoré por completo de ese angelito. Ya no había ninguna confusión en mi mente, y desde entonces siempre me escucha y a su manera siempre me da alguna respuesta.

Aún es difícil de entender cuando gente dice que los niños con síndrome de Down son muy cariñosos y todo lo demás, pues por que ellos quieren matarlos antes de nacer? 
Vivimos en un mundo donde sólo lo perfecto es aceptable, pero luego me pregunto qué es un bebé perfecto, nadie sabe cómo él o ella se va a desarrollar. Creo que la sociedad ha cambiado sus valores, los niños se han convertido en bienes similares a los del supermercado, podemos elegir un niño y devolverle a la estantería si no es perfecto o si no nos gusta y no lo queremos. Creo que eso es muy triste...

En esos treinta y seis meses después del nacimiento de Victoria la vida ya no fue la misma. Victoria es una niña única que enriquece nuestras vidas con su energía y entusiasmo. Vivo el día a día enseñándole lo poco que sé y ayudándole todo lo que puedo, creo que mi buen Dios ahora, quizás, me ha perdonado por mi duda y mi ignorancia y por el tiempo perdido en la depresión y la tristeza causada por mi confusión en el pasado. Sin embargo, de vez en cuando, las lágrimas aún mojan mi cara cuando pienso en cómo sería si Victoria no tuviera síndrome de Down. Cuando eso sucede su sonrisa es como un bálsamo en mi corazón dolorido y ella ha conseguido más de lo que yo esperaba.


Soy solamente un ser humano,  como muchos otros llena de debilidad, pero con un corazón abierto para aprender a vivir con lo que he recibido. Yo no soy suficientemente dotada para entender cómo de un árbol imperfecto puede crecer una flor tan hermosa y convertirse en un fruto dulce y delicioso. Tal vez porque ella es mi hija y yo la amo y no la cambiaría por nada en el mundo, creo que Victoria eligió a sus padres y tenía razón.


© María de Fátima Campos, ARPS, ABPPA 2001


Si usted está interesado en el patrocinio de este proyecto o en publicarlo o exhibirlo, por favor llame al 0208 883 8638 o envíe un correo electrónico a photos@campos-davis.com

Victoria tiene su propio sitio web: www.campos-davis.com/victoria.html donde se pueden ver todas las últimas cosas que hace.


Cosas que los padres deben tener en cuenta:

Dieta: Victoria se ha beneficiado de una dieta libre de lácteos, pero cuando los productos lácteos deben ser utilizados usamos productos de cabra. Los productos de vaca tienen más de una enzima, que estimula las células caliciformes que producen moco; los productos de cabra son más fáciles de digerir y tienen menos de esta enzima. Algunas frutas y verduras también estimulan las células caliciformes, pero algunos reprimen la producción, como los puerros y las cebollas, el kiwi, el limón, etc.

Prueba de tiroides: Esta debe llevarse a cabo una vez al año por un médico.

Examen de audición: Otitis media adhesiva (bloqueado en el oído interno) es frecuente en los niños que tienen síndrome de Down. Pruebas periódicas de audición son necesarias.

Dentista: El proceso de la dentición se inicia casi al mismo tiempo como para los demás niños, pero normalmente lleva mucho más tiempo y parece ser muy doloroso. La mandíbula superior está menos desarrollada, el número de dientes puede variar y pueden ser afilados.

Los exámenes del médico: Para asegurarse de que los nuevos médicos tienen el enfoque correcto para las personas con discapacidad, llevamos a Victoria para ser examinada por los estudiantes de medicina en el hospital local cada seis meses. A ella le gusta el lío y los estudiantes de medicina tienen la oportunidad de conocer a un niño con síndrome de Down. Los profesores la ven como una "estrella".
Si desea saber mas acerca de los retratos de niños, familias, etc. por favor va al sitio web Campos y Davis Fotos.
Maria tiene exhibición permanente de su trabajo en Fun Yum, Prior Park, Crouch End, London N8 y Mini Kin childrens hairdressers, 22 Broadway Parade, Crouch End, London N8

Por favor firme nuestro libro de visitas

Volver al inicio

 

 

Hello I'm Victoria....
I'll let my Mum tell our story.

 

 

    

         One day before Victoria was born, 14th March 2000.

 

 

 

    
Victoria weighed 2.6 kilos when she was two days old at the Whittington Hospital, North London.
     
 
Victoria's feet showing the typical "sandal toe" gap between the big toe and the others. This is a sign that Doctors look for during an initial examination.
     
     
 

Other characteristics of people who have Down's syndrome are that the sinuses are not developed properly and this can cause the tear ducts to block and make them look like they are crying all the time.

Victoria had her tear ducts lanced to overcome this problem. This has to be done before the child is four years old to be sucessful.

  

 

 

  
Victoria looks out at her new world from over the hospital blanket.
After two days she manages a smile.
 
Breast feeding is very important for all babies especially for children with Down's syndrome because Mother's milk offers better protection for the imune system than formula milk. and the imune sytem of children who has DS is almost always suppressed.  
 

 

 

  
 

Left: Victoria holding her Dad's hand with a strong grip.

Right: Victoria with her Dad

  

 

 
 

 

 
 
Sometimes when she looks up at me I want to bend down and give her a hug and a kiss

 

Left: Baby massage when Victoria was three months old, at Palace for All, London.

Right: Cranial Osteopathy to help her sinuses drain properly. We first met Paul Naisbitt at the Osteopathic Centre for Children and the treatments were dramatic at first, helping to to get a good nights sleep.
   
     

Far left: Victoria has physiotherapy at the child development unit locally. Here she is learning to roll over, which is the first thing that babies learn prior to standing up.

Left: Learning to "pull to stand" using a ladder aid at Palace for All. These sessions were once a week for about one hour.
     

 

 

    


Victoria is very interested in music as are most children who have DS, and it is a great stimulus for them.

 

 
Far left: Conductive Education at Palace for All, Islington, North London, where Victoria learnt to crawl along a bench and, (left) to do "over & over".
   

 

 

Victoria learning to walk along the bench and climb stairs.
This strengthens her sense of balance.

These exercises are continued daily at home .

 

  
     

 

 

    
Victoria enjoys music therapy at Palace for All. The group session is lead by a therapist who encourages all the children to use instruments and join in.
   

 

 

  

Far Left: She is very interested in books and runs her fingers along the lines of text.

Left: Yoga4Special Kids is a programme developed for children with special needs which Victoria goes to on Saturday mornings for forty five minutes. She started yoga at the age of one year and four months and enjoys it, sometimes trying the positions at home on her own.

 

 

 

 

    
Mediated learning experience has helped Victoria with congantive development and speech & language. This involves Makaton and repetitive tasks at the Thinking & Learning Skills Centre, Golders Green, London.

 

 

    
Victoria is very dependent on us feeding her and the mediated learning experience
has been helping her to feed herself. .

 

 

Victoria signing "Yellow".

The sign language "Makaton" was developed in Makaton, USA for adults, but has been adapted in UK for children with special needs who understand but can't articulate.
Makaton is used to stop frustrated children who have DS from not being able to communicate their needs to carers.

Victoria enjoys making signs for all the animals she knows, as well as tellling me she needs a drink or the toilet etc. We have been teaching her Makaton since she was two months old. As I speak Portuguese to her and her Father teaches her English, we use Makaton as a bridge between the two languages. One of my favourite signs to her is "I love you" which is holding two hands over your heart, she returns the sign to me and smiles.

 

 

      
   
  Victoria and her friends at Tumble Tots. She has been attending since the age of eigtheen months. Tumble Tots has been very useful for Victoria to improve her balance,agility and coordination. It has helped to build confidence with walking, rolling, climbing following instructions through listening, singing and movement, but she likes the "train" when they change exercises and all go around the hall to another piece of equipment.  

 

 

      
Victoria enjoys school

 

 

      
Some times my Mum talks too much!.....
I'll take over now

 

 

    
 
  Me and Mummy playing angels.
Mummy loves me so much that sometimes I feel I could fly.
Daddy doesn't like to play "girly" games, he prefers Tele Tubbies.

 

 

 

    

Bye Bye....
     
     

Victoria and Me

This photographic project documents the first three years of my
daughter's life who has Down's syndrome

She is my daughter and I love her.

Probably like many others mothers to be, I was feeling proud, good, beautiful and very healthy, but with some worries about the future. To be pregnant was like a dream come true for me, because I never thought I would have a baby. Even today sometimes I look at her and think; it is real, I do have a baby! I was full of dreams and plans for the baby, who would grow healthy, intelligent, and very successful of course, hoping that I was expecting a normal baby. I always asked God to give me a physically, mentally and spiritually healthy baby who would also believe in Him. Because I believed that God would give me the right child, as long as it was what I wanted. I thought I deserved a perfect child.

I talked to her a lot during the pregnancy and when she kicked me I cuddled her feet, or what I thought were her feet. Some times during the night I used to ask her to move because I was worried and not sure if she was all right.
The day she was due to be born I got up in the morning and could not feel Victoria moving, I felt there was something wrong.
I thought maybe it was because the day before I spent all day taking a self portrait of her inside me and got too tired to move to reset the camera. Worried about her silence and her not moving I asked her to respond and she didn't. I phoned the hospital and said what was going on and the nurses told me to wait because they were too busy. Knowing her very well I decided to go to my GP, he sent me straight to the hospital. Hoping that everything would be perfect, I had a plan for the great day including a water birth like the South American Indians have, but after all that preparation the consultant came and said my baby's heart was in distress and the baby had to be born immediately by caesarean section.

Seven minutes later Victoria was looking at me upside down with one eye open. A thought that came to my mind instantly that her eyes looked like she had Down's Syndrome but I couldn't think straight anyway at that time during the operation and dismissed it.

After we left the operating theatre the midwife who had assisted came and said that she wanted to have my baby examined by a paediatrician because she suspected Victoria had Down's Syndrome. A Doctor appeared and then another and they confirmed they thought she had it.

I had decided when I got pregnant that if my baby was a girl I would name her Victoria because it is a simple and strong name and only a victorious child can survive in this wild world, but when I heard the news and started to observe that little baby with Down's Syndrome, and possible heart problems, I was so devastated. I thought so irrationally, that this baby would never survive, and I will keep this name for another one because I felt it was not a suitable name for such a weak baby. I was very disappointed, angry, not thinking straight, I remember saying to my husband that we could try for another one and I would have "the test".

When I started to realise what had happened I got very upset and I couldn't believe it and thought that God had made a mistake, how could he do this with me? Probably like many other parents I never thought that kind of thing could happen to me.
The midwife came and saw me so upset that night, crying uncontrollably, she asked what happened and I told her and she said she does not look like she has Down's Syndrome, but if she has, and you do not want her I want her. "She looks a lovely baby and I am thinking of adopting a baby with Down's Syndrome because my neighbour has one who is the must adorable child I've ever seen" she said.
Full of elation, I felt very optimistic that she didn't have it, that the doctors made a mistake, and I hoped that the blood tests would prove that.

Richard, my husband, seemed to accept things and just got on with finding out about what to do next to help Victoria. He was very positive and encouraged me. He has tried to learn as much as he can, not only to help his daughter but also to give support to other new parents who are in the same situation as we were then, through the Down's Syndrome Association London Branch.

As the time passed by in the hospital it was very busy and noisy with all seventeen babies in the ward crying, except my one, who was very quiet. Many friends called and some were very optimistic and said, don't worry she will grow up with our children and some were very encouraging, they didn't see that to have a child with Down's Syndrome felt like the end of the world. Some phoned and the first thing they asked was if I was not offered "the test", but other friends were more upset than me it seemed. I remember one very good friend asking how could this happen with you and crying down the phone at me. "You are so strong, so healthy, so perfect" she said. Some sent emails saying these are angels in the form of babies, they are very special, you should thank God for such a gift, but others said silly things like some of "them" managed to walk and maybe will even be able to talk. Others never called or sent a card, presumably they didn't know what to say…

As the time in hospital went by, still blaming God for his mistake, many thoughts came into my mind trying to find an answer to my questions, an explanation to ease my pain and I started to think back to when I became pregnant. What kind of mistakes had I made to have a daughter who has Down's Syndrome, what have I done to deserve this? Some times I felt so guilty because I knew I was in a high-risk category, should I have had "the test"? However, I could not have let anything hurt the baby in my womb, which "the test" may have done. I only wanted to protect her, and now I was feeling like I had committed a crime. I felt irresponsible for not accepting "the test" which could determine whether my child had Down's Syndrome.
Amniocentesis is an invasive test that involves inserting a needle into the womb to extract a fluid sample. It carries a risk of miscarriage or a physical or mental disorder in the case of a surgical mistake, and I thought I did not have the right to play Russian Roulette to stop her giving her contribution to the world and a chance to show us what she has to offer. As a Christian I believe in life.

Suffering from shock I was thinking totally irrationally now. I started to think if it was because I only began to take folic acid after I got pregnant, or because I had pushed myself too much, just back from Brazil and working very hard day and night to make sure I would finish my book before Victoria arrived.
All these questions came to my mind to find an answer.

After two days I managed to successfully breast-feed her. Holding her very close to me, face to face - eyes to eyes, I talked to her in Portuguese and praised her, like I always did during the pregnancy; I am your Mummy. I carried her with lots of love; I will look after her and help her to reach all her goals, whatever she wants, because I love her. She opened her eyes and smiled at me, I fell in love completely with that little angel. There was no longer any confusion in my mind, and since then she has always listened to me and given some answer back in her own way.

Still it is difficult to understand, when people say that children who have Down's Syndrome are very loving and all the rest of it, that they want to kill them before they are born? We live in a world where only the perfect is acceptable, but then I ask what is a perfect baby, no one knows how he or she will turn out. I think society has changed its values, so that children have become like goods in the supermarket, we can choose and put back on the shelves if it is not just right or if we do not like it, I think it is very sad…

During the thirty six months after Victoria's birth life has not been the same. Victoria is a unique child who enriches our lives with her energy and enthusiasm. Living day-to-day teaching the little I know and helping all I can, I think that my good Lord has now, hopefully, forgiven me for my doubt and ignorance and for the time wasted on depression and sadness caused by my confusion in the past. Yet occasionally tears still wet my face when I think how Victoria would be if she did not have Down's Syndrome. When that happens her smile is like a balsam on my painful heart and she has been achieving more than I expected.

I am just human, like many others full of weakness, but with an open heart to learn how to live with was has been given. I am not gifted enough to understand how an imperfect tree can grow such a beautiful flower and it become a sweet and delicious fruit. Maybe because she is my daughter and I love her and would not change her for the world, I believe Victoria chose her parents and she was right.

© Maria de Fatima Campos, ARPS, ABPPA 2001

If you are interested in sponsorship of this project or to publish or exhibit it please call 0208 883 8638 or email photos@campos-davis.com

Victoria has her own web site at www.campos-davis.com/victoria.html where you can see all the latest things she does.

Things that parents should be aware of;
Diet: Victoria has benefited from a dairy free diet, but when dairy products must be used then we use goat's produce. This is because cow's produce has more of an emzine in it which stimulate the goblet cells to produce mucus and goat's produce is easier to digest. Some fruit and veg also stimulate the goblet cells, but some repress the production, such as leeks and onions, kiwi, lemon etc...
Thyroid test: This should be carried out once a year by a doctor.
Hearing test: Glue ear (blocked inner ear) is common with children who have DS so regular hearing tests are needed.
Dentist: The process of teething starts about the same time as other children but usualy takes much longer and seems to be very painful. The upper jaw is less developed and the number of teeth can vary and be sharp.
Doctor's exams: To make sure that new doctors have the right approach to people with disabilities, we take Victoria to the medical student exams at the local hospital every six months. She enjoys being made a fuss of and the medical students get a chance to meet a child with DS. The professors think she is a "star".

There is an exhibition "From the Family Album" by London photographers whose children have Down's syndrome;
2nd to 16th June at the Pavilion Cafe, Albert Road Recreation Ground, London N22.
The photographers taking part are;
Kayte B, Fiona & Richard Bailey, Maria de Fatima Campos,
Richard Davis, Aviv Yaron, Fiona Yarron-Field

If you would like to know more about Maria's portraits of children, families etc., please see the
Campos & Davis Photos web site

Maria has examples of her work on display permanently at Fun Yum, Prior Park, Crouch End, London N8 and Mini Kin childrens hairdressers, 22 Broadway Parade, Crouch End, London N8

Please sign our guest book

Back to top
     
If you can plaese make a donation to Down's Syndrome London
by clicking here