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Chase's Story
"My name is Jennifer. I was 17 weeks along when we found out something was different about our little miracle..."
The ultrasound tech couldn't see Chase's stomach. Later we found it was hidden behind his severely enlarged liver and spleen. We were told then he could have Cystic Fibrosis or CMV. I knew what CF was and initially hoped it wasn't that only to find out CMV was worse than CF. After an amnio test was performed at 20 weeks, it was confirmed CMV. We had no idea what or why or how I had contracted it. After some very intense research was done, we realized I had to have gotten it while working at the nursing home. I was an activity director and had no idea I was in any danger. After the amnio test, I was told that if Chase continued to have a small head and large heart he would have severe signs and multiple symptoms from the CMV because he contracted it during the 1st few weeks of gestation.
At week 23, I had an experimental treatment called immunoglobulin done to try and boost Chase's immune system. About three quarters of the way through, I started having a severe reaction with uncontrollable shakes and they had to stop the treatment. Although I didn't receive all the medicine, I am very glad I got it. We were told two weeks later that Chase would have to come early if we wanted a chance for him to survive. I was devastated how could a baby live outside the womb so early. I thought if I keep him in, he is safe and I could protect him. I was wrong. I would have delivered a still born if he would have stayed in. His heart could not take the strain to keep his little body alive.
At week 26 I went in for my 12 hospital stay to monitor Chase's heart rhythm. A week later on Sunday we got to go home under the conditions I stay in bed and go directly to my doctor first thing Monday morning. I did just that. Little did I know that day my son would take his first breath that evening. At 9am, I was getting my ultrasound done by our MFM (maternal fetal medicine) doctor. He had a concerned look and said he would be right back. I was so scared. I knew something was wrong. He came back and said Chase's heart was under too much stress and was becoming severely enlarged he could only survive a day maybe two in the womb. I went straight to the hospital thinking I had a little bit of time. At 12 my Ob called and asked would I like to see my son today. I freaked and said no, but yes and how could this be. She said the delivery would be a C - Section and it was best for Chase. There was 1 surgeon, 3 NICU doctors, 3 nurses, and a team for me in that small room. All I could think of if I heard him cry, everything would be ok. He would make it out fine.
At 5:46 pm, he did just that right before being rushed to the NICU. He was 3lbs 3ozs and 15 inches long with severe jaundice that made him look brown. His liver and spleen were tremendously enlarged and his stomach was extremely small due to his liver and spleen being so large. He could not hold platelets and had to infused every few days. After a week, Chase had a full body blood transfusion.
We spent three and a half months in the NICU and then 7 months in the PICU after that. In the beginning, Chase was on TPN fluids to give him nutrition and strength because he could not digest my breast milk very well. We started a few cc's at a time. The doctors said it was good for Chase to get my milk because it had antibodies in it to help him fight the CMV. Although I pumped every few hours, due to the amount of stress I was under, I dried up and we had to go to predigested formula. I still remember blaming myself because the one thing I could do to help him my body had quit on me. I kept being mad and wondering how I let this happen to my baby. It didn't matter how many doctors and nurses told me it wasn't my fault, I couldn't let it go.
Chase got to come home on a feeding pump after three and a half months weighing in at 4lbs 7ozs. I was the happiest mommy in the world. Although I had become a single parent because my husband couldn't handle the stress and abandoned us after a few weeks in the pregnancy. No matter, I had Chase and he had me. We stayed close to his hospital for almost a year due to all the times he had vomiting spells or would pull out his feeding tube.
At 7 months old, we were told Chase would need a liver transplant due to its function only being at 32%. There was a catch. He could not have the surgery if he could not gain weight the doctors didn't feel he would make because he was so tiny. In August that year, at 8 months old, Chase got his permanent feeding tube.
Chase will be 2 this December the 21st and is thriving. He still has a large liver and spleen and small head and we monitor his platelets monthly. Although he has all of this, he is just like a typical little boy his age. He has therapy once a week and continues to amaze everyone around him. All his doctors say they don't know how he's here but I do. Faith saved him and me because we never gave up. He didn't either.
- Shared by his mother, Jennifer