This is an anonymous blog post
After two years of fighting , Jessica will now permanently live with us. She is my niece, the daughter of my sister but suffers from Foetal Alcohol Spectrum Disorder and I want to share my story with you all.
What is FASD?
FASD, Foetal Alcohol Spectrum Disorders is an umbrella term for several diagnoses that are all related to prenatal exposure to alcohol (i.e. while a baby is still in the womb)
- Foetal Alcohol Syndrome, FAS
- Partial Foetal Alcohol Syndrome, PFAS
- Alcohol Related Neuro-developmental Disorder, ARND
- Alcohol Related Birth Defects, ARBD
- Foetal Alcohol Effects, FAE
FASD is a series of preventable birth defects caused entirely by a woman drinking alcohol at any time during her pregnancy, often even before she knows that she is pregnant. Beer, wine, spirits – it’s all the same to the developing baby.
The term “Spectrum” is used because each individual with FASD may have some or all of a spectrum of mental and physical challenges. In addition each individual with FASD may have these challenges to a degree or “spectrum” from mild to very severe.
These defects of both the brain and the body exist only because of prenatal exposure to alcohol. Often the condition goes undiagnosed, or is misdiagnosed, for example as autism or ADHD, and this can lead to secondary disabilities.
The challenges a person with Foetal Alcohol Spectrum Disorder faces may include:
- Intellectual Disability; lowered IQ
- Memory Disorders
- Learning Disorders
- Attention Disorders
- Sensory Disorders
- Speech and Language Disorders
- Mood Disorders
- Behavioural Disorders
- Autistic Like Behaviours
- Sleep Disorders
- Visual and Eye Defects
- Hearing and Ear Defects
- Mouth, Teeth and Facial Defects
- Weak Immune System
- Liver Damage
- Kidney Defects
- Heart Defects
- Cerebral Palsy, Muscular Defects
- Height and Weight Deficiencies
- Hormonal Disorders
- Skeletal Defects
- Genital Defets
Jessica has lived with us for the last 2 years and 4 months, it has been a very difficult time but I love my daughter with everything I have and wouldn’t change her for the world she is an amazing inspiration and she is my world.
And here I will explain why.
Foetal Alcohol Spectrum Disorder; Jessica’s Story
Jessica was 8 months old when she first came to us, she was a very unhappy baby, one who spent all her time in her pushchair, was rarely picked up and comforted.
She never seemed to smile, but one thing we did notice was the fact that she was rarely still, we put this down to being in her pushchair all the time.
Within a few weeks of her being with us she became a different child, one who laughed and squealed a lot, but one who couldn’t stay in one place for very long at all. She had so much energy and was on the go all the time.
I thought this was because she had been so used to being in her pushchair and now she had all this freedom she needed to explore and move around.
With her constantly on the go you would have thought that come nap time or bed time she would be shattered but this was never the case, she would only sleep for around 2-3 hours at a time.
I expected this was because it was the first few weeks with her being in a new place and around people she didn’t know very well but this continued months after she was with us.
As you can probably imagine this was very tiring but we kept getting told that it was normal, many of my friends had children of around the same age and their children mostly slept through the night and had naps in the day, Jessica never had a nap in the day, it was amazing how she could keep going.
When Jessica was around 18 months we started to notice she was a lot more active than other children of her age but still we were told that it was normal so we just carried on.
Sleepless nights, long days soon caught up with us and we were being to feel at our wits end as nobody was helping us, it wasn’t normal for a child of her age to be like this. So we started to do some research of our own and that is when we came across F.A.S.D.
Jessica birth mother had drank throughout her pregnancy every day, and just a small amount she has admitted it was around a litre bottle of vodka a day and whatever else she could lay he hands on.
I knew that drinking in pregnancy was bad, but not what effects or to what extent it would affect a baby.
When Jessica was 2 and a half my health visitor came to see me and said she had just been to a conference all about F.A.S.D and all the way through all she could think about was Jessica, finally we felt like we were getting somewhere.
We were referred to a specialist at the hospital who before we even got in her room to speak to her had said to us that she had Foetal Alcohol Spectrum Disorder.
Her diagnosis explained so much
Her poor sleep, her hyperactivity, her challenging behaviour, her development delay. Finally we had an answer to the reason she was the way she is.
It didn’t make things any easier to deal with though, if anything it was very scary to think that all this was caused by alcohol.
Jessica behaviour is very erratic, she is happy one minute very angry the next she has hurt both me and my partner when she has lashed out, it’s scary because as she is getting older she is getting stronger and stronger and harder to control.
Her personality is also very scary as she has no conception of danger so won’t think twice about talking to a stranger or even going off with one, she doesn’t show any empathy to anyone and can’t comprehend feelings of others.
So as you can see from the drinking her birth mother did it has affected Jessica life in massive way.
The scary thing about it is, all these effects can be caused by one just one drink in pregnancy.
This is not something I knew up until recently and is very scary to think that one glass of wine, one vodka n coke or even half a pint of larger can damaged you baby before its born.
I would now say to anyone who is pregnant that it’s not OK to even have one drink in pregnancy as the damage is awful and irreversible.
So maybe before you even get pregnant think about what you are drinking as this is preventable.
I can’t put down all of my experience as it would just be too long but I can update on Jessica as she gets older and the difficulties she faces and overcomes.
This is an anonymous blog post. You can share your own experience to help others. All blog posts submitted via the blog anonymously email form will be added to the blog anonymously for you, just like this blog post has been.
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Had you ever heard of Foetal Alcohol Spectrum Disorder?