TOFS survey - To establish incidence of a 'lost twin' in TOF/OA pregnancies

“Data from one study showed that a child from a twin pregnancy is nearly three times more likely to have TOF/OA than a child from a singleton pregnancy…  It is possible that some cases of TOF/OA occur in one twin where the co-twin was lost at an earlier stage of pregnancy and may not have been appreciated either by the mother or the doctors looking after her.”
(excerpt from ‘The TOF Book' in the chapter written by Consultant Clinical Geneticist Charles Shaw-Smith)

TOFS invites all parents who have had children born with oesophageal atresia and/or tracheo-oesophageal fistula to take part in this preliminary survey (regardless of yes or no answers), to better understand the possible link between these conditions and a ‘lost twin’. 

The survey should take no more than a few minutes and we are grateful for your time.  Both 'yes' and 'no' responses are equally valid and useful.  In reporting the results, all responses and comments will be anonymized.  More comprehensive research may follow.

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* 1. Is there any history of twins on either side of your TOF child’s family?

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* 2. Did you experience any significant blood loss in the first three months of your TOF pregnancy?

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* 3. Was there a point in time where miscarriage appeared to be a real risk?

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* 4. Were you told by your doctors that you had lost a twin at any point during your pregnancy?

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* 5. Did you give birth to twins?

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* 6. How old were you when you gave birth to your TOF child?

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* 7. How many weeks into your pregnancy did you give birth?

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* 8. What was the birth weight of your TOF child?

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* 9. Is your TOF child male or female?

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* 10. Please tick all that your TOF child was born with:

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* 11. Have you ever taken your TOF child to see a Clinical Geneticist?

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* 12. Where did you find out about this survey?

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