Turner Syndrome FoundationNot Forgotten Children
On January 9, 2019 our family received some disheartening news. Our genetic screening came back abdormal and reported we were expecting a baby girl with Turner Syndrome. On January 13, 2019 Gracie went to heaven at 11 weeks 5 days gestation.
Losing a child to Turner Syndrome during pregnancy is more common than having a child survive with Turner Syndrome. There is no known cause for this condition. Turner Syndrome is a spontaneous and random error that leads to a missing X-chromosome.
Today, we still do not fully understand all that needs to be known about Turner Syndrome. It is totally and completely unfair, yet thousands upon thousands of families find themselves in this position every year. These are not forgotten children. They lived among us, and they will always be remembered because they touched us briefly and their love remains.
Katalina’s Story
Source: Pittsburgh Post Gazette 7/16/19
Earlier this year, Gabriela and Ben Hershman, of Oakmont, became one of those families. At a routine visit early in the pregnancy, their doctor couldn’t find a heartbeat and sent them for an ultrasound. While the ultrasound showed a heartbeat, it also showed abnormalities in the lymphatic system. Their baby was later diagnosed through genetic testing as having Turner syndrome, in which girl babies have one missing or incomplete X chromosome.
Told that Turner syndrome is fatal in utero 99 percent of the time, the Hershmans prayed that their baby would be the one who defied the odds, and also began documenting the pregnancy at a boutique ultrasound clinic, InSight Imaging in Monroeville, that produced more detailed pictures than the standard hospital ones.
The owner of the ultrasound center, Henriette Clark, partners with Ms. Bradley to provide free ultrasounds to families facing life-limiting diagnoses, and suggested the Hershmans contact her.
They met Ms. Bradley soon afterward, starting to talk about tough subjects like stillbirth that the Hershmans hoped they wouldn’t have to confront.
