Talen, born 2011
When I was 33 weeks pregnant I found out that there was a slight problem visualizing all of the vessels coming off of my son's heart on an echo ultrasound. I was sent to Children's Mercy Hospital to have a pediatric cardiologist take a look. My family’s lives were forever changed. I was told my son had pulmonary stenosis and would require open heart surgery shortly after his birth. I could not compose myself and my husband sat in disbelief. We were sent home to wait out the rest of the pregnancy with frequent ultrasound to follow my son's progress.
I finally gave birth to Talen at 41 weeks of pregnancy at St. Luke’s Hospital in Kansas City, Missouri. I delivered him naturally in the OR where the NICU team was waiting because we were expecting his oxygen saturations to be around 75%. My son came out pink and looked healthy with an oxygen level of 94%. I thought the cardiologist was wrong, and maybe my son was healthy without a heart defect. Approximately 2 hours later, another pediatric cardiologist performed an echo cardiogram and explained to me my son's complicated heart defect called Truncus Arteriosus. I was told he would need at least 3 open heart surgeries in his life. Once again I could not compose myself. I was looking at a seemingly normal baby; he looked perfect on the outside.
Within two day of birth Talen was in congestive heart failure and on a regimen of drugs to help take pressure off of his heart and lungs. We lived a St. Luke’s for 15 days and finally transferred via ambulance to Children's Mercy Hospital across town to await his first open heart surgery. Talen was exactly 4 weeks of age when he received the major repair to his heart. Talen's surgery began at 7:00 in the morning and we were finally able to see him at 5:30 in the evening. The surgery was not supposed to take so long but it took the team of doctors and nurses almost 2 hours to secure all of the IV access point required for the surgery. He was then placed on a heart-lung machine and his body temperature was cooled so Dr. Lofland, the cardiothoracic surgeon, could begin his surgery. The repair went well. The large hole between the ventricles was closed, the "trunk" was moved over and made into his aorta, and the cadaver pulmonary artery was sewn into his branch pulmonary arteries.
The surgical team then took my son off of bypass and his heart wasn't quite ready. He went into ventricular fibrillation and had a severe episode of pulmonary hypertension. Kelly, the nurse practitioner came out of surgery every 2 hours to update us on our son's progress. When she told me of this set back I found myself praying harder than ever before. Kelly informed us that they gave his heart some medicine and they were going to put him back on the bypass machine to allow his heart to rest for a few hours and try to take him off bypass again. Kelly came back to update us and she said that my son was off the bypass machine and doing great.
Nothing ever prepares you for the first time you see your child after being through an event like this. He had tubes and lines and leads coming off of every inch of his little body. He had a breathing tube doing 100% of his breathing because they had him medically paralyzed. He had two towers of medication infusion pumps infusing meds into his tiny body. His chest had a gauze pad over it but his chest plate was not closed. The surgeon opted to leave his chest open to allow the swelling to go down. The surgeon came to our child room in the PICU to check on Talen and told us they planned on closing his chest in a few days. This was absolutely the most exhausting, stress-filled day I have ever endured.
The following morning, to my surprise, Dr. Lofland was at my son's bedside closing his chest; two days ahead of schedule. My son was released from the hospital on July 29, 2011; 5 1/2 weeks after his birth and 10 days after his open heart surgery with no tubes, no wires, and no monitors.
Talen is doing marvelous! He had his first maintenance angioplasty on his branch pulmonary arteries and he will have another one in the spring of 2012. He continues to brighten up our lives! He is truly a gift from God.
Story by Talen’s mother, Kim – Missouri