Cati

Cati ~ Full Trisomy 13 ~ Born:  April 26, 2011

 

Cati was a planned baby- we already had a son that lit our lives and filled our home with energy and curiosity and smiles, and we badly wanted a little girl to join him. So we were thrilled when we found out that we expected a girl. On a later ultrasound we were told that she had ARSA (abberant subclavial right artery).

She was born at 38 weeks, by a planned C-section, and weighted 3.700 kg (more than my son!). She had trouble breathing, had a brain hemmorage and had to be put in an incubator. I immediately asked if she had Down Syndrome. She did not, I was told, but there were several things wrong with her- extra small pinkies on both hands, a vellar cleft palate and a misshaped forehead (trigonocephaly- I found out later). Her skull was cut in 2 places (cutis aplasia)- a sure sign of Trisomy 13. Later on we learnt that she had cataract on both eyes, her heart is set on the middle but has no life threatening conditions. She was suspect of spina bifida, but we ruled that out.

No doctor would tell us what was wrong with her. We had to instist that the only neonatologist who seemed to know what was wrong with Cati, would tell us. She first said that Cati stood no chance. Later, she took a medical book and showed us a little 5 year old boy with T13- “Who knows, Cati might survive”, she said. “Doctors are not God and they cannot predict anything”.

I, on the other hand, asked my brother to search Trisomy 13 on the internet. After reading the statistics, I was sure she wouldn’t make it. It was so unfair! There she was, a little girl that nobody rejoiced for, that

nobody dared to love for fear we would lose her. I decided right there that she was NOT a bad thing happening to us, that she was sent by God with a message of love, that she must have a purpose and a meaning. I wanted to discover that purpose, but most of all, I wanted Cati to be loved.

She had a good sucking reflex, so we could bottle feed her, first with a special nipple for cleft palate, and later we discovered that she would feed better with a normal, soft nipple. She had two spells of apnea in the first week, but none later on.

We brought her home at 3 weeks and waited for her to die, as we had read. She didn’t. When she was 6 weeks old, I made my mind to treat her as if she survived. We took her to a PT to have her evaluated (she missed some reflexes and had hypotonia). The day she turned 3 months old she started Physiotherapy- and a year later, her therapist told me that Cati surpassed her expectations.

We started testing her and all results came out better that we expected. “Better that we expected” seemed to describe Cati’s life. We weren’t sure she could hear- but it turned out she has normal hearing. We knew that she had cataract, but the ophtalmologist told us that her sight axis is free, so she can perceive things and doesn’t need immediate surgery. Her heart check went better than we expected, too- some abnormalities and median position, but no treatment or surgery required.

She started rolling at four months, but stayed at this stage for a while. At almost 14 months, she can initiate crawling on a downward slide, she can grab a toy and shake it, she tries to push buttons and puts everything (mostly her two thumbs) in her mouth. She is very sweet tempered and has a sunny disposition.

When she was 13 months old we took her to the UK for an evaluation with NACD, and we started this neuordevelopemental program. We hope her chances of progress are better now.

One thing I can say about her is that she is LOVED beyond our imagination, People that do not know us fell

in love with her just by watching her pictures, and she has brought so many friends in our lives. I blog about her, and when she turned one she got over 100 birthday greetings from virtual friends. I can see how she changed lives and quenched fears, and her happy disposition was labeled as “therapeutic”. She fills our lives with joy and laughter and teaches us a lesson of perseverance and fight and trust. We cannot control what is going to happen, but every day with Cati is a day we don’t miss her, so we live one day at a time.
Cati turned two years old this April, and she made huge progress this past year- she mastered army crawling, she can babble (says “ma-ma” and it is a joy to hear her voice!), she can use her pincer grip, understands what we are saying, knows lots of body parts, responds to commands, survived pneumonia, chicken pox, ear and eye infections and innumerable colds, without having to stay one night in the hospital so far.

 

We hope these stories of children with trisomy will inspire you. From cleft lips to contagious smiles, group of families are here to offer you support as you begin your trisomy journey. It seems we only hear of the problems that come with a child having Trisomy . There is so much more to these sweet lives. Each day the living children bring joy to their families as they accomplish simple tasks or reach a milestone, the angels remind us that life is short but a blessing all the same and they will forever be engraved in our hearts. Be sure to check back for our next story or update and until then....Embrace life one moment at a time ~  Vanessa  

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