I remember a series of moments that showed me Trisomy 18 isn’t a death sentence.
I was six months pregnant when Maternal Fetal Medicine found a bowel obstruction on ultrasound because a place in my baby’s bowel hadn’t finished forming. That was when the one-artery umbilical cord and growth in the 28-33 percentile became significant clues. But my baby grew, and she made it through.
After my daughter was born, a successful bowel resection was performed when she was 4 days old. Then doctors found that she also needed a PDA repair in her heart, and a catheter procedure was also successfully performed when she was two weeks old.
After my baby was brought back from Transfer Hospital to the Local Hospital, I remember the NICU doctor at Local Hospital insisted my baby would never nurse, or use a bottle, and was certain to die before she left the hospital NICU. Except I told him he was wrong and then stormed to the lactation room in the corner with her cradled in my arms… where we proceeded to have our first successful nursing session. When my baby turned seven weeks old, we were discharged and went home.
For five months, I mourned my living daughter. She was supposed to die, or die at any time. But she didn’t. And then we celebrated her first birthday at the time of her birth — 2:04 AM! — because she’s always been a night owl. She had steamed green beans, and cupcakes to celebrate — her first self-fed foods. What a birthday gift.
And then she celebrated her second birthday. More cupcakes. Soon we are set to meet with her first school to discuss her first IEP plan. Her first day of school will be on the day of her birthday… her THIRD birthday.
Trisomy 18, Edward’s Syndrome, isn’t any more of a death sentence than Trisomy 21, Down Syndrome. T18 is just misunderstood the way T21 used to be before doctors began to intervene. And I am confident that, since T13 individuals share similar symptoms as those with T18, interventions for individuals with Trisomy 13 will eventually follow suit as medical advances continue to improve.