With time ticking away, clinicians scramble to save newborn twins from the disease that took their brother
A decade earlier, her happy, easygoing little boy had died just after his second birthday. And now here she was, pregnant with twin boys, hoping against hope that they wouldn’t have the same mutated gene that killed their older brother. So when Alyssa Martin found out 21 weeks into her pregnancy that they, too, had inherited the faulty DNA, “it just felt like the end of the world,” she said.
This time, though, Martin knew what she was up against. While she was still pregnant, she and a team of doctors devised a plan to try to save the twins. The boys’ best hope was an experimental drug — a form of copper injected under the skin twice a day — designed to counteract the effects of that mutated gene, which wreaks such havoc on the body’s copper levels that it often kills boys before age 3. If the medication was to have a chance of working, doctors believed, it was crucial that the twins get it within weeks after birth — so time was of the essence.
But getting that drug to Charlie and Kolton Martin proved to be harder than anyone imagined.
In the weeks after the twins were born in December, a University of Iowa medical geneticist and her team went to extraordinary lengths as they raced to obtain the medication. Again and again, they were forced to improvise as they encountered unforeseen obstacles: They were stuck in limbo during a weeks-long period in which both a drug company and representatives from the National Institutes of Health said they were powerless to help. The twins developed painful welts and then a worrisome respiratory infection.
And during the polar vortex that chilled the Midwest last week, when a
