“He was too early but we thought “we can do this. Our Elliot will be ok”.”
Elliot Barger, Trisomy 13, 12/23/2014 to 12/27/2014, Arlington, TN
My husband and I were so very very excited when we found out we expecting another little one to our family. We were a little nervous as well seeing as we already have two girls but that nervousness wore off quickly. I immediately stopping drinking caffeine, started taking my vitamins, scheduled a doctors appointment, and began watching what I was eating. I felt so differently with this pregnancy than I did with my girls so I was so excited hoping for a boy. I always wanted a son. At the beginning my levels were low so I was on a progesterone supplement for my first trimester and had ultrasounds every two weeks. But everything seemed to progress just fine. At 21 weeks we went in for an ultrasound and found out it was a BOY! I was through the roof excited!! My pregnancy continued to progress as normal until about 28 weeks when I started having some bleeding. My OB checked me and had my normal lady give me an ultrasound. He did all he could to find out where it was coming from but couldn’t. So he sent me to a place for a special ultrasound. I went in that day, alone, thinking all they would say is I was dialating too soon. After my ultrasound, I was taken into a room where a man came in and told me the scariest news I had ever heard… at the time. My son had a CHD. It looked bad. I lost it. I ran out of there as fast as I could. I went straight home and told my husband where we held each other and cried. A week later we went back and met with the pediatric cardiologist who told us that it looked complex but he could fix it. That everything would be ok. Everyone felt relieved, except me. I continued to go back for more ultrasounds every week. At 34 weeks they found kidney problems. The doctor thought it might be polycistic kidney disease but wouldn’t know for sure until Elliot (we named him William Elliot. William is a family name on both sides. We call him Elliot) got here. We were more afraid then ever. How could all this be happening out of nowhere? A week later I went into labor. We went to the hospital so afraid. He was too early but we thought “we can do this. Our Elliot will be ok”. Elliot was delivered via c-section and immediately taken to the NICU. The doctors came in to tell us that his heart was not as bad as they thought and he wouldn’t need heart surgery immediately but he had many other abnormalities. He had a cleft palate, an extra finger on each hand, the skin on the top of his head hadn’t formed right, his skull in the front of his head hadn’t formed right, his ears were low set, he had spine problems, and his already existing kidney problems and CHD. I was so scared. So scared. I just didn’t understand. I had to wait until the spinal block wore off to be able to go see my son. When I got to the NICU I lost it. Seeing him hooked up to all those tubes was a horrible site. I couldn’t even run his leg because he would get over stimulated and his heart rate would go so high. The doctors put had Elliot on a ventilator but it wasn’t helping so they put him on some type of other breathing machine. Christmas Eve night the NICU doctor sat us down and told us they had done all they could but Elliot just seemed to be getting worse. The doctor believed he had Trisomy 13 and said if he did he wouldn’t survive….. My husband and I were in total shock. How could this be? The nurses just told us yesterday he would be home by the new year! What is going on?!?! The doctor said we had three options; keep Elliot there and continue doing what wasn’t helping, send him to LeBonheur, or unhook him and hold him until he passed. We chose LeBonheur. We wanted to give our son every chance possible. Elliot was transferred just a few hours after. We couldn’t leave until the following morning after I was discharged. We spent Christmas morning in the hospital room with our family with the dark cloud hanging over us. That afternoon I was discharged and we headed straight to see our Elliot. When we got there he had been paralyzed and sedated. It was such a horrible site. One minute we were being told he was better the next we were being told he wasn’t going to make it. The night of the 26th we had to go home to be with our other girls and explain to our 7 year old that Elliot was very very sick. That night at about 11 o’clock we got a call… The call we had been dreading. We had to get to the hospital… Fast. We rushed there and were told his numbers were dropping. I asked if I could please please just hold my son. I hadn’t held him yet. They set him on my lap still hooked to all the machines and his heart rate began to drop. Fast. We decided it was time. They unhooked the machines and I held my son to my chest as he took his last breath. I could tell it was pretty immediate but they called his time of death at 2:00 am on December 27, 2014. I held him and cried for what seemed like forever. Then got up, bathed my son for the first time, changed his diaper for the first time, made footprints, wrapped him up tight in a blanket and sat down and held him. My husband said I held him for hours but it felt like minutes. Then the nurse came in…. I asked where she was taking my baby! She said she was very sorry but she had to take him to the morgue. So I handed my son to the nurse, got up, and walked out of the hospital. Empty handed. With just the bag that had his things. I could never explain the pain that was consuming my body at the time. I knew that was it. Later that morning we received a call from the geneticist that confirmed Elliot did in fact have Trisomy 13. I saw my son one more time. The morning he was cremated. I stayed with him and rubbed his head and talked to him for hours. Knowing I would never seem him again. At least in this lifetime.