“It has now been one week since Samuel was born and still continues to surprise everyone!”
Samuel Kroeker, Trisomy 13, 10/24/2015, Amarillo, TX
When we found out my wife was pregnant with our second child we were so excited! God has blessed us again! At 20 weeks Kim went in for a sonogram and when the doctor talked to her about it they said they saw something that needed further review by a specialist. They then sent her to Texas Tech for another sonogram. Feeling a bit worried that something wasn’t right I went with her. The specialist said that our baby boy had a cleft lip and possible palate, and a heart defect. There were other markers as well that pointed towards a chromosomal disorder. At 23 weeks the nurses took Kim’s blood for the harmony test and we would have the results in a week. When they got the results they called us back to the office and told us that our baby has trisomy 13. Our hearts immediately broke and we spent a long time just crying. They told us he likely would not survive birth and that if he did he wouldn’t last long. We spent the next months of her pregnancy begging God for a miracle. People all over the country were praying for us and baby Samuel! On October 23 just two weeks shy of the duedate Kim began to have contractions and off to the hospital we went. After nearly thirteen hours, Samuel was brought into this world on October 24th at 2:32 am. The neonatalogist visually diagnosed him with full trisomy 13. He said he wouldn’t leave the hospital alive. He suggested comort care and to just love him and keep him warm.
Samuel had many problems. He had a large cleft lip and palate, an omphalacele, ( his intestine was in his umbilical cord) two holes in his heart and his heart was not developed on the left side. He also has a little extra diggit hanging off his pinky and his other pinky was skinnier than normal. He was diagnosed with microphthalmia (very small eyes). The doctors gave no hope for our baby. On Monday night we took our baby home. He has struggled eating and we try to give him as much as he will take. He gets tired very easy with only half a heart. He still has jaundice which we try to put him in the sun a little every day. We took him to his pediatrician and were told the same thing, that he would only last a two days at most.
It has now been one week since Samuel was born and still continues to surprise everyone! We as parents feel like we are not doing enough for our baby but are unsure of where to go from here. We are considering taking him to Dallas to try to fix his heart and his umbilical cord, but we’ve been told he wouldn’t survive surgery. If anyone can give any advice to a young couple who desperately needs direction it would be greatly appreciated!