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Articles from prior issues of The Advocate

May/June, 1999


My Child Met A Listing
by Angela Jordan Deterding, Missouri DDS

I LEARNED I WAS CARRYING twins when the ultrasound technician said, “Here is your baby, and here is the other one.” Of course when he said it, I thought he was pointing to another arm or leg, not another baby! I had the usual twin complications with pre-term labor and hypertension, but all of my many ultrasounds looked great. My biggest fear was that they would be born premature. At my thirty-seven week ultrasound, the babies were approximately seven pounds each, and I was ready to “get on with the show.” The boys were born June 15, 1998, by an uncomplicated Caesarian section and were taken to the Neonatal Intensive Care Nursery (NICU) to monitor their blood sugars. I was told this was fairly normal, and looked forward to having the children brought to my room later that day. Tyler weighed seven pounds and Mason weighed six pounds five ounces. The doctors decided to keep Mason in the NICU because his blood sugar was still low, and I was told that Tyler’s chest x-ray was abnormal, so they were going to treat him with antibiotics for infection. The next day, the nurse told me that Tyler’s chest x-ray was worse and Mason was doing fine. I soon learned that Tyler had a heart murmur, but I was not too concerned since I knew this is fairly common for newborns. Next, the phone to my room rang, and the nurse said those fateful words, “Is your husband with you? The doctor would like to speak to both of you.” I knew at that point that my world was about to collapse. We were soon told that Tyler had a significant heart abnormality and needed immediate surgery. Within hours, Tyler was intubated and transported by a charter airplane with a medical team to St. Louis Children’s Hospital. My husband and father left Springfield two days later and drove to St. Louis, while I stayed with Mason in the hospital in Springfield. We soon learned that Tyler had an interrupted aortic arch and a five-millimeter ventricular septal defect. When Tyler’s aortic arch formed, it did not connect to the vessel that goes to the lower part of his body. The hardest thing I ever had to do was to stay in Springfield, while two days later they performed open-heart surgery on my child in St. Louis. I received multiple phone calls throughout the day from my husband, giving me updates on Tyler’s progress. After a week, Mason and I were discharge from the hospital in Springfield, and three days later we joined my husband in St. Louis. Tyler stayed in the hospital until July 4, 1998 when we brought him home. His surgery had gone well, but the surgeon had interrupted his heart rhythm while repairing Tyler’s heart, which made it necessary for a pacemaker to be implanted. When we brought Tyler home, he had to have a nasalgastric tube for feedings until his strength returned. We slowly got him back on bottle feedings, (even though he seemed to spit up everything we put down him.) After two months he quit spitting up and slowly gained weight. At six months of age he had only gained to eleven pounds. He has continued to improve and has become quite an active baby. The twins are now 11 months old. Tyler weighs 14 1/2 pounds and Mason weighs 16 pounds. Tyler learned to roll from front to back at eight months and is now sitting on his own. Crawling appears to be just around the corner and the doctors think he will soon catch up on his developmental milestones. Unless you know he has a pacemaker, you would never recognize what the child has gone through. Mason is sitting up well, crawling and getting into everything! We have learned that Tyler’s heart developed the way it did because of a chromosome abnormality. One of his two chromosomes labeled “22” has a small piece missing off of it. This is sometimes referred to as “DiGeorge Syndrome,” “Catch-22,” or “Velocardio Facial Syndrome.” Mason also has this piece missing but has not developed any of the problems usually associated with this syndrome. We do not know if the twins are identical or fraternal, but the genetic community is interested in studying Mason and Tyler since one twin developed problems and one did not. We will be going to Children’s Hospital in Philadelphia this summer to participate in a research program. We hope that this research will lead to new information about genetics and fetal development.

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