“One thing I can say about her is that she is LOVED beyond our imagination…”
Ecaterina Manea, Trisomy 13, Piatra Neamt, jud. Neamt, Romania, 4/26/2011
UPDATE: Cati (full T13), turned 4 years old today. So far it has been her best year healthwise, because we started several supplements that boosted her immunity and cognition. We went slow on PT this year, but at 4 she can sit, crawl on all four, stand up and cruise furniture. She loves roosters, stars, music, toys with lights and sounds and, most of all, her iPad. This year she gained a new brother, whom she ignores completely and is a little gelous of 🙂 She can identify colours, pictures, she knows how to play her apps, how to turn on her toys. She can put things in containers, she can wave bye and clap her hands at request. She knows the parts of the face and some parts of the body and shows them on mommy 🙂 Her joy and smile light up our World!
See Cati’s very nice website at: http://farasastieingeri.
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), wich is a soft marker for Down Syndrome. I refused to see a geneticist, as abortion was out of question, anyway. We found out that ARSA was common to 2% of the healthy population, and hoped that our little girl would be ok.
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 insist 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. So my husband and I embraced her, took her as a blessing, as a good thing happening to us.
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 could see her smile on the very first week of life. She didn’t cry like other babies, you could hardly hear her (and she still is the same)- but she was soft and cuddly, with the silkiest skin I had ever touched.
We transferred her in the hospital in our home town and could keep her for 10 days in the NICU unit, because my husband worked (still does) there as a social worker. She was very well treated, but nobody had enough patience to feed her, she just took soooo long… so she didn’t gain any weight the first month- she actually lost some. We took her home with 3.400 kg. At 14 months she weighs almost 10 kilos, and is really tall (taller than average).
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 up 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 neuro-developemental program. We hope her chances of progress are better now.
She has been pretty healthy for her first year (considering her diagnosis)- 3 or 4 UTIs (we still need to check her kidneys), one pneumonia (because of a virus she got from her brother- got well quicker than the doctor expected, surprising him) and a rotavirus (that she also got over).
Taking care of her was, well…better than we expected- she had the same needs as a normal baby, a colicky one with a bad diaper rash from time to time, but apart from her PT hours and her delays, nothing was very different than raising a normal baby.
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” and solar.
Her life is not a mistake, she was not made less lovingly or wondrously than the rest of us. 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 is almost 23 months old, she can crawl, use her pincer grip, can say ma-ma (although without meaning attached to the word), survived chickenpox and is as happy and hard working as always.