My husband is in the Army and not long after we got married, we were blessed wtih the wonderful and unexpected news that we were pregant with our first baby. At our 20 week appointment, we found out it was a boy. Finally, it became clear, we knew his name instantly...Jayden. We also found out he had a mass on his left lung and there started the additional trips to the Army Medical Center in Honolulu. Every month, or sometimes two times a month, we made the 45 minute trip to check on the mass, which we were told is not very common, but it happens and usually goes away within the first few months of life, if not by the 9th month of pregnancy. We had no real worries.
Then, on one of our "regular" screenings, the ultra sound tech noticed the right side of his heart was a little smaller than the left. We followed up, and prepared to hear the news we had not ever thought could happen...Jayden was diagnosed with Pulmonary Stenosis in addition to the mass on his lung. I was 30 weeks pregnant at the time and the cardiologist informed us our son might need surgery soon after birth.
We flew back East. The night I went into labor I was home visiting family, and ended up having Jayden in New Jersey. After 36 hours of labor, he was here: 7lbs 1oz 19 inches long. We were overjoyed. The doctors said it would take some time but he would eventually come home with us. On March 31, he was helivacted to the Children's Hospital of Philadelphia and almost immediately after arrival was given surgery to put in a shunt, which seemed to help him. On April 1st, the doctors called to ask to perform another sugery--to put in a cath to help them better see Jayden's condition.
As we sat in the waiting area, a doctor called us into a small room and began to inform us our son was going to die. At 21 and 23 my husband and I had to make the hardest decision of our lives: to let our beautiful angel go. Jayden not only had Pulmonary Stenosis, but Pulmonary Hypertension and Hypoplastic Right Heart Syndrome. The doctors had never seen a patient with so many heart problesm
At 8:53 on a rainy Wednesday night, my husband held our little boy in his arms, as I spiked his hair and watched the life we gave him go back to heaven. We had not known of heart defects and certainly figured it would not happen to us or our child. We are still dealing with the grief, but we remember him every day. We are thankful there are programs and people who are supporting and fighting this silent and misunderstood disease.
Shayna Rojas (Jayden's mom)