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 When
I found out I was going to have a baby I was really happy, my family
too. We have been wanting to have a baby for a long time.
When my son was born, we didn’t know about Patau-syndrome. His right
ear wasn’t developed completely and on the top of his head he lacks
epithelial tissue.
Until his first month, the feeding was really hard and he couldn’t
sleep well at night. He was 5 weeks old when his breathing stopped
the first time. We administered CPR on him at home, afterwards we
took him to the hospital.
In Budapest the doctors checked him over, but they didn’t find
anything. Afterwards they took blood. Two months later he was
diagnosed with Patau-syndrome.
He has got problems with his sight and with his hearing too. He has
had a CT and MRI check too, but those checks didn’t show any big
discrepancies. He has had two operation because of intestinal
blockage in 2008.
Until then, he had developed well in comparison to his illness.
After the time in the hospital he didn’t move like he did prior to
being in the hospital. So he gets help from a Physiotherapist and he
gets on well. Now he can eat with spoon, but just pasty foods. He
gets formula from a feeding bottle every evening.
Meantime we ascertained that he has milk-allergy. After that he
gained weight and had increased muscle strength, he became more
powerful. He had his first seizure in May of 2009. This was later
diagnosed as epilepsy. He takes medicine and his seizures are rare.
 He
can turn his body and can use his hands too. He is slowly developing
his speech sounds and is now babbling.
In the family we love him so much, we spend a lot of time with him.
We don’t know what kind of Patau-syndrome he has, but the doctors
tell us it is the full syndrome, but it was not thoroughly
researched.
We get help from different kinds of therapists and from teachers of
special education.
We continue to try to get in contact with specialist in order that
Ádám will have a better life.
Tünde Simon Bíróné - mother (Speaks Hungarian - Special Education
Therapist and Translator for family from Hungarian to English: Anett
Buczkó) E-mail:
birosimontunde@freemail.hu
Gábor Bíró- father
sister: Vivien Bíró Ádám's
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Translation