Part 1: Ashlyn
By: Michelle L. Cramer, OAW Founder & President
Incompatible with life.
That is the phrase most Trisomy parents hear just moments after receiving their child’s diagnosis. Nearly every Trisomy family we have encountered to this point has been told to either terminate pregnancy upon diagnosis, or to expect that their child will be stillborn.
Ashlyn was diagnosed with Trisomy 18 while in utero. After the diagnosis, her mom, Jessica, reports that they saw upwards of 20 nurses, social workers, doctors and genetics counselors and none of them could give Jessica and daddy, Andrew, any hope. Because of her small size, Jessica requested that they monitor Ashlyn’s heart rate but “they told me no, because they would not do anything during labor to save her if she became distressed.”
Ashlyn was born on September 30, 2014 with a cleft palate. Jessica attempted to nurse her, but Ashlyn would choke because she couldn’t swallow. The hospital put Ashlyn on an NG Tube with continuous feedings, but she was still choking and her O2 stats would drop so dramatically that she turned blue. The nurse would rub her chest and they put her on oxygen, but nothing changed, despite Jessica’s insistence that they simply decrease how much they were feeding Ashlyn.
“The doctor came in and told me that this is what they expect to see with Trisomy 18 babies, and that I could take her off of everything and take her home to be with her until she passed,” Jessica recounts. But she refused to give up, stood her ground and finally got them to lower the feedings.
Ashlyn went home just a few days after arriving and is now three months old and thriving! Though every hospice nurse that comes in to help Jessica care for her comes with the expectation that Ashlyn will die at any minute, because the training they are receiving have them anticipating a struggle for life when there is none.
The contrast between the hospital staff here in Missouri that has been treating Ashlyn and the doctors and nurses at the Shriner’s hospital in Chicago (who will do surgery to correct Ashlyn’s cleft palate) is stark. Jessica explains:
Shriner’s was more concerned about her lip and palate. I told them that Ashlyn had Trisomy 18. The nurse asked about her symptoms. I told them she was no longer on oxygen and was keeping her food down. She talked to the doctor and he said once she was at 10 pounds they would do the surgery. They took pictures, weighed her and measured her. They asked me to me explain a little about the Trisomy 18 to a counselor and that was the end of it. They didn’t bring it back up. They treated her like she is a normal baby that just needed her lip and palate fixed so she could eat normally. They treat her like a person not a diagnosis like they do around here.
Ashlyn’s first surgery on her cleft palate is scheduled for March 20th. Jessica and Andrew are excited to watch this transformation unfold, giving Ashlyn an even stronger chance at survival.
