Will my Disabled Daughter have a Place in this Genetic Wonderland?
By Ian Birrell,
The Guardian
| 08. 07. 2014
I can still remember each second of that day just before Christmas when everything changed. The happy family lunch, then the seizure suffered by my tiny new daughter, her eyes rolling and little limbs flailing. The nice paediatrician telling us gently she had “profound brain damage”, then carrying her with tears in my eyes through crowds of festive shoppers.
The next months and years are harder to recall, a blur of dark times later identified as the mourning period that parents in such cases endure. There were batteries of tests, endless scans, the same ceaseless questions as she was prodded, probed and wired up to weird machines. But there were none of the expected signs of brain damage, nor any clues over her condition from the doctors searching for a diagnosis.
One supposed expert measured our heads before declaring breezily that our daughter – then suffering up to 30 seizures a day – would have only minor impairments to her IQ. Others were more realistic, offering gloomier prognoses as it became apparent she would never walk, talk or feed herself...
Related Articles
CGS is excited to announce the launch of a new anti-eugenics initiative that has been years in the making. Legacies of Eugenics in Science, Medicine, and Technology kicks off with a monthly essay series published at the Los Angeles Review of Books that will expose and contest the reemergence of eugenic ideas in contemporary health sciences, human biotechnology, public health, and medicine. Community and campus-based events featuring the authors are also being planned. The project is a collaboration among CGS...
By Jason Kehe, Wired | 04.11.2024
God help the babies! Or, absent God, a fertility startup called Orchid. It offers prospective parents a fantastical choice: Have a regular baby or have an Orchid baby. A regular baby might grow up and get cancer. Or be born...
By Neel Shah, The Preprint | 04.11.2024
Years ago, I interviewed for a residency position at The Johns Hopkins Hospital in Baltimore. Standing before the domed Victorian building at the campus entrance, I couldn’t help but be in awe of the history of the place, the great...
By Eleanor Hayward and Joanna Crawford, The Times | 03.29.2024
Gazing out at the Mediterranean from an idyllic rocky mountaintop, Sophie Hermann announced to her half a million Instagram followers that she had decided to freeze her eggs. Since that post in August, the 37-year-old former Made in Chelsea star...