Little Hearts


My husband and I were excited about the upcoming arrival of our second son, Drew. Two months before his due date, we were faced with some very unexpected news. Following an ultrasound, my ob/gyn informed me that our son had a heart defect. He had Transposition of the Great Arteries. We were upset and began to do research about it. We were optimistic that after open heart surgery, he would recover and lead a normal, healthy life like so many babies do. A few weeks later, we had an appointment with a cardiologist who performed an echocardiogram that revealed that Drew also had a Ventricular Septal Defect. We were still optimistic for a full recovery.

Drew was born on November 30, 2009. Following his birth, an echocardiogram revealed another heart defect: coarctation of the aorta. Drew had a total of three birth defects. He had his open heart surgery a week after his birth. The surgery had gone well until a couple of hours post surgery. His heart rate began to drop and his chest had to be re-opened. He also had to be rescusitated. That was the beginning of a roller coaster ride that would continue for the next 3 weeks. Drew was stabilized but had a difficult few days. Then we thought he was on the road to recovery, however, 5 days after the surgery, Drew was having more problems related to blood pressure. One of the doctors sat us down and told us they were very concerned about Drew and the option of ECMO was brought up. Fortunately, Drew became stable again, however, he continued to have difficulty with his oxygen levels and low blood pressure. Drew's doctors referred to him as a "mystery". There did not seem to be a cause for his lower oxygen levels and inconsistent blood pressure. He was sent to the catheter lab to further investigate these issues. The Catheter procedure could not be completed due to a clot in his right leg. Drew was put on TPA, a clot busting drug. There was a risk for brain bleeds with the TPA so his neurological signs had to be closely monitored. The catheter procedure was continued two days later. The structure and function of his heart were adequate. He did have a narrowed pulmonary artery. Following the procedure, the decision was made to insert a shunt into his right pulmonary artery the following day. We were very optimistic following the second open heart surgery. His oxygen levels were greatly improved and he seemed to be headed in the right direction.

For the next week and a half, Drew would make some improvements and then backslide He would get weaned off his blood pressure medications and then his pressures would drop and he would be put back on his medications. We were still hopeful until one Monday morning, the hospital called and said that Drew had a rough night and his blood pressures kept dropping. The medication and volume administered all evening were not keeping his pressures up. We had to get up there as soon as possible since the doctors were not sure how much longer he was gong to live. Once we arrived at the hospital forty minutes later, Drew was somewhat stable. His doctors wanted to talk with us about Drew's health. His doctor described his condition as "capillary leaks', where any volume that was placed into his body leaked out into his tissues. His body was not able to maintain an appropriate blood pressure. He was maxed out on all his blood pressure medications and could not receive anymore. We were running out of options to help Drew. His capillary leaks could be attributed to an infection, however, he had been receiving antibiotics and this had not helped him. The option of ECMO was brought up again and then rejected by us and his medical team. ECMO was not going to solve Drew's problems with the capillary leaks. Drew's blood pressure was varied throughout the day. He required more volume. He was also beginning to not produce much urine, a sign that he had renal insufficiency. My husband and I stayed the night at the hospital, expecting to hear any minute that he had passed away. The following morning, Drew's condition had worsened and we discussed comfort measures with his doctors. Drew was dying and there wasn't anything we could do to help him. We made the extremely painful decision to let Drew go peacefully that morning. We got to be with him and hold his hands while he took his last breaths. We all had such hope that he would continue to fight and get well. He was a fighter in this life, and now he is our little Angel.

Written by David and Tammy, Drew's parents - Tennessee

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