Follow the advice of their doctors and contact with associations or groups with e.b. because it will serve as orientation and you will meet other similar cases.
You are not alone, that many have experienced the same thing, that is as close to someone who has had experience, to report, to carry out the treatments that you need.
At 12 weeks pregnant I politely declined to take part in any antenatal screening, confident in my belief that even if something was not quite right that I would continue with the pregnancy anyway (Down Syndrome being top of mind considering that I wa...