Arden’s CDH Story
At the 20-week anatomy scan, our hearts sank. We were told Arden had a congenital diaphragmatic hernia (CDH), a spinal anomaly, cleft lip and palate, missing her stomach, as well as several other minor defects. My husband and I spent the next eight weeks deciding on what to do. Arden was not our only child, and we lived in an area that was not capable of life-saving measures for Arden. Relocating was not possible for our family at the time. Eventually, we decided to allow death and love her every second of her life. We were told she most likely had a genetic condition, and we did not want to go through several (and countless) surgeries to prolong her death. I had a c-section with my first child, so the goal was to do a vaginal birth and hold her as long as I could. Fortunately, the plans changed. Unfortunately, though, just after 31 weeks pregnant, I was diagnosed with an acute form of leukemia and shipped out of state to Medical City Dallas, where I immediately started chemotherapy. I remained pregnant with Arden until I was 32 weeks pregnant. I had an emergency c-section under anesthesia. Because I had to be under general anesthesia and could not be awake for her birth (or death), we opted to put her on life support.
The neonatal team promised they would do everything in their power to keep her alive until I woke up but prepared me for the strong chance of her passing before I woke up. I required a complete blood transfusion as well as several other bags of blood products. I woke up the next day in the ICU, still intubated. As soon as my husband saw my eyes, he said, “She made it,” and I started to cry. Arden was in the NICU and had maxed out the vent settings but was stable. She did not require any CPR and never coded. She was very, very sick but stable. She was born at only 32 weeks but weighed just shy of SIX pounds!
I remained in the hospital for 28 days and was discharged to go home, 6 hours away, to continue outpatient chemo. Arden had several surgeries while in the NICU. At two weeks old, Arden had her right-sided CDH surgery that was broken down into 3 parts, lasting over a week. Her tiny body needed rest between procedures, so they covered her organs with plastic and kept her comfortable in between surgeries. They ended up finding her very small and underdeveloped stomach! Arden spent a total of 61 days at Medical City Dallas until she was discharged home. I was so excited to bring her home because I couldn’t drive due to my sickness and could only see Arden on the weekends and the NICU camera from my phone.
Arden is almost two years old and doing very well. She was formally diagnosed with VACTERL association, caudal regression syndrome (which caused a form of spina bifida), cleft lip and palate, g-tube dependent, kidney/urinary defects, bowel defects, as well as my favorite: a third thumb!
Despite all of this, Arden brings joy wherever she goes. She is the HAPPIEST child. As hard as it was, we are thankful for my cancer because, without it, she wouldn’t be here. Arden has changed my life, and I am forever grateful we get to grow old together.
