Indiana, a Trisomy 18 Angel

Indiana was a surprise! We were unsure if we would be able to conceive because of my age. On July 16, 2020 I realized I was late. That night I went home from work (I’m a RN and it was the height of COVID) and took a test. It did not result so I ran out and bought another. By the time I got home the first test resulted and it had a faint positive. The second test was digital. It was positive! The first weeks of my pregnancy went by quickly and easily. At 10 weeks, I had an ultrasound and everything looked great. I went the same day for my NIPT screen.

Exactly 10 days later on September 14, 2020 my results arrived. My doctor's office called and said my baby had a 1 in 17 chance of Trisomy 13 or 18. But the gender did not result. On that very same phone call, I was encouraged to terminate my pregnancy if my baby had Trisomy 18 after my amniocentesis. That day my amnio was scheduled for 17 weeks. It was a torturous wait.  I had to travel 90 mins to have my amnio and I knew from my work as a NICU nurse that the hospital was not Trisomy friendly. So at that point I made a plan with The Center for Fetal Diagnosis and Treatment at The Children’s Hospital of Philadelphia to receive fair care. If my amnio showed Trisomy 13 or 18 I would transfer my care. On October 29, 2020 my amnio results showed Trisomy 18. They also showed that we were having a baby girl. We were so excited. We were pushed again to terminate that day. I said no.  

November 20, 2020 I transferred my care to CHOP.  They were caring and compassionate and they gave me hope. Indiana was named that day. She was diagnosed with a large VSD and a coarctation of the aorta as well. She also had clenched fists and rocker bottom feet. CHOP gave us hope and supported us with all our decisions. It was a relief.

At this point, my blood pressure started to rise. On January 13, 2021, I was hospitalized for 2 days at CHOP to either deliver at 29 weeks or get my blood pressure under control. We said lots of prayers and my blood pressure stabilized. I was discharged a few days later and relocated to The Ronald McDonald House in Philadelphia for the remainder of my pregnancy. I saw the doctors multiple times a week and got the best care.

On March 4, 2021, Indiana showed us she was in distress and she was born via emergency c section. Indiana weighed 3 pounds 9 ounces and was 15 inches long. She came out wiggling but not crying. She was stabilized on CPAP and taken to the NICU. It was determined Indiana needed to grow to be big enough to get her trach and heart surgery. She made us so happy she even was smiling around her ET tube. She showed her nurses and doctors what Trisomy babies could do. My husband and I made friends with the nurses and they learned about the Bible and prayer from us.

Two days before her surgeries at 6 weeks and 1 day of life, Indiana went into a pulmonary hypertensive crisis. She was unable to survive it. On April 16, 2021 she danced her way into the arms of Jesus.

Indiana loved all things with chickens on them.  She was curious and had bright blue eyes that liked to be nosey and to look at all her neighbors. Indiana strengthened our relationship with our families and God. We are so thankful for her. She is my greatest accomplishment and I’m so lucky I got to be her Mom.

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