“It felt like the world was closing in…this kind of thing doesn’t happen to me; it happens to other people.”
Addalyn Grace Froehner, Partial Trisomy 18, 03/10/2015, Euless, TX
Our Addalyn Grace has been the best gift ever! We went in to be induced on March 10,2015 after a fairly normal pregnancy. Once they hooked me up to the monitors to watch contractions and her heart rate, it was determined very quickly that Addy wouldn’t be able to handle labor. Her heart rate was dropping every couple minutes (and they had not given me anything to induce me yet). My doctor called to see how things were going and was at the hospital within 30 minutes to do a c-section when he heard what was happening.
Everything happened so quickly, I didn’t have too much time to panic. She came out screaming and much smaller than anticipated. She was also having trouble breathing on her own so they let me see her long enough to give her a kiss and then took her to the NICU. While in recovery the nurses were talking about how tiny she was and that she couldn’t have been full-term (believe me, she was), and the excess amount of amniotic fluid I had. One nurse reassured me Addy’s bilateral cleft and palate could easily be repaired and that no one would even know she had it later in life. That was really the least of my concerns…I didn’t understand why she was only 4lbs 5oz.
It wasn’t until the following morning that we heard the term Trisomy 13/18 from the NICU doctor. She kept pointing out “flaws” in my perfect baby as indicators. They had genetic done and two days later we were informed she has Trisomy 18 and that we probably would have a few days to maybe a couple weeks with her. It felt like the world was closing in…this kind of thing doesn’t happen to me; it happens to other people. They asked if we wanted to take her home to spend as much time as we could with her in the comfort of our home. Of course that’s what we wanted…we were just given what we thought was a death sentence for our daughter. We were discharged under hospice when she was three days old.
Since coming home we have learned so much more about her diagnosis and that there are things that can be done to help her. She has an ASD and VSD, bilateral cleft lip/palate, and requires an NG tube to eat. We have been to over 30 appointments since her birth four months ago, and plan to continue to do all we can as long as she is willing to keep fighting! She has changed our lives more than we ever could have imagined and we thank God for every day with our sweet Addalyn!