This is the story of Céline, told by her mother Alexandra in 2009. Céline was born in april 2009, they live in the Middle-East.
My name is Alexandra and I am 43 years old. 7 months ago I gave birth to a beautiful, lovely, fantastic girl. Amniocentesis had revealed she was triple x and my doctor had told me that “I would have to take a decision”! WHAT A LACK OF SENSITIVITY, isn’t it? On top of this it was Christmas time, I was abroad, no doctor available for opinion. I started to browse the net and found horrible stories, some really untrue as the geneticians I spoke with afterwards told me. The sadness is that people mix triple x with other syndroms and the information gets confused.
So, in a nutshell, what I want to tell future mums of triple x girls is the following:
- Be careful about what you read on internet, some of it is real rubbish
- Consult geneticians, not just family doctors or paediatricians;
- What I learned about this is that we only hear about the sad stories, people who have no problem tend not to share it.
- Many girls who have triple x are actually unknown because they have no problem.
- This is also a reason why the studies are not so reliable, because there has not yet been any good scientific sample made that looks at ‘healthy’ instances of triple X, but rather all studies so far seem based on samples of girls who have experienced a kind of problem.
- Relax and be happy: triple x is not a handicap and it is not a big problem, really. At most, your child may (MAY) have difficulties to learn language, read. And so what? I grew up with a brother who has a very high dyslexia and I know what it means… It can happen to many kids without genetical issue.
My daughter Céline is gorgeous, happy, very curious of everything, playful, alert… at 7 months she sits and plays and eat OK and all is fine in her development. Sometimes I look at her and think about what my doctor said “you’ll have to make a decision”… and now I can smile.
I don’t want to be seen as overwhelmingly optimistic to people who have girls who may face challenges, notably other challenges than triple X. What I intend to do is to pass the message to pregnant women that, when diagnosed pre-natal with triple X, when torturing yourself with needing ‘to take a decision’, first take your phone and consult two different geneticians to have two opinions. You will enjoy your baby so much! Triple x girls may (MAY) face challenges but from what I learned there is no “handicap”, and there is no physical challenge either. And in no way we can speak about “retard”! All babies may face challenges like difficulties to learn/speak. Children may become bipolar, children may be dyslexic, all this without triple x.
Warmest regards,
Alexandra
Note from the editor: there are population studies done, where all newborns in a certain period of time were screened for chromosome differences. From those studies, we have a good impression how the children do. Selection bias as Alexandra suggests, does not seem to have a huge impact. The range of outcomes in trisomy X is really wide. Where many have some language delays, some have no issues at all and some need considerable extra support.