November 07, 2015
Author: Jessie Christians,
Mother of Quint Christians
Quint was born on November 7, 2015 at 36 weeks. He weighed five pounds and eleven ounces. Everything seemed great at first; we were overjoyed to have a healthy baby boy. We named him Christian Boyen Christians V, after his father, making him the fifth generation to hold this name so he also earned the nickname “Quint.” Quint spent the first night with us in our hospital room. He was very sleepy and lethargic and we noticed he didn't want to eat. I kept thinking it's because I'm a first-time mom and I don't know how to breast feed him, yet. The lactation specialist came in the next morning to help quint feed but he was still too sleepy. They checked his blood sugar level, discovered it was dangerously low, then the nurse told me Quint was being taken to the NICU.
We thought the NICU would be a short journey. In fact Brian, our NICU nurse, called us, “short-timers.” He assured us that once Quint started to eat, his blood sugar would rise and he would be more alert and out of the NICU in no time! A few days passed and Quint wasn't progressing. Nurse Kristi was checking Quint’s vitals and noticed he had a heart murmur so she ordered an Ecoh. Five doctors surrounded Quint during the Ecoh. They discovered that Quint had several major heart defects and would need open heart surgery at the tender age of only two weeks old.
Quint’s congenital heart defects included narrow transverse arch, coarctation, open PDA, ASD hole, VSD hole, abnormal pulmonary valve and aortic valve and the left side of the heart was much larger than the right. During the open heart surgery, they were able to repair everything except the valves and size of the left chamber. Quint then developed JETT Arrhythmia and, for two days, his heart rate was above 200. They left his chest open until this subsided and closed his chest two days later. He had another surgery to remove four central lines and chest tubes and the fourth and final surgery was a Gtube placement.
That was the longest and toughest few weeks of our lives. It was so hard for my husband and I to watch our newborn baby go through so much. Just when we thought we thought the open heart surgery was behind us and Quint was on the road to recovery, we received more devastating news. Quint’s genetic testing indicated that he has an extremely rare microdeletion in one of his chromosomes. This condition is called Kleefstra Syndrome. Quint is one of less than 300 Kleefstra Syndrome cases in the world. Based on our research, we learned that Quint is not going to be able to live a normal life. Kleefstra Syndrome children are special needs children. They have limited speech and mobility, if any at all. There are a lot of other compilations including congenital heart defects, weak immune systems, kidney and liver complications, behavioral problems, seizures and the list goes on and on.
Quint is nearly three months old now and he is doing great! We can't thank the medical staff at Methodist Children's Hospital enough. They saved our little boy and made our two and a half month stay in the NICU as pleasant as possible, given the circumstances. Thank you, Methodist Children’s Hospital.
Jessie and Chris Christians