A Heart for Crystal

On April 13, 2004 Crystal Naomi Clausen was born to Cindy and Clifton Clausen. Crystal was born with Hypoplastic Left Heart Syndrome, meaning she was without the left ventricle. April 16, 2004 Crystal had her first open heart surgery, the Norwood procedure. This was the first step in fixing her heart. The day she turned three months old she received the second step in fixing her heart, the Glenn Procedure. One week later they modified the Glenn procedure. When Crystal was almost two years old they were going to do the Fontan procedure, the last surgery, but they decided against it because she was doing ok at this point. By the time she was ready for the procedure it was too late, and if they opened her up one more time her heart would rupture and she would die. Her only hope was a heart transplant.

Each year more than 40,000 children are born with heart diseases. As of July 31, 2007 1,332 heart transplants have been done nationally this year. Ninety-eight heart transplants have been done on children five and under this last year. Around 85% live one year after their transplant and 75% live about five years after. Approximately 50% of transplant recipients live twelve years after the transplant. These numbers are increasing all the time with the more transplants that get done but they would like this percentage to increase dramatically within the next few years, although with the lack of organ donors right now they would rather do surgery on young children instead of a heart transplant.

Hypoplastic Left Heart Syndrome is a very rare disease leaving doctors with only two ways to treat it: 3 Step Surgery and a Heart Transplant. Soon After the baby’s birth Stage 1 Norwood Procedure is needed. This will allow the right ventricle to provide permanent circulation throughout the body. It also gets the baby ready for the final surgery. During the second surgery; The Glenn Procedure, the vein that routes oxygen from the upper half of the body is connected to the artery that routes blood to the lungs. The vein that routes oxygen from the lower half of the body is connected to the artery that routes the blood to the lungs in the last surgery the Fontan Procedure. After these procedures have been done oxygen-poor blood can then travel to the lungs for oxygen, by bypassing the right side of the heart.

The other way to treat this disease is to do a heart transplant. Hypoplastic Left Heart Syndrome is the most common disease that the child might need a transplant for although it is a rare disease. Before a child receives a new heart they must undergo many tests to make sure that they are healthy enough for a transplant, to match you with a donor, and to determine how urgent the need is for a heart. First they have to have blood tests done these are to get the blood type so the child does not experience an allergic reaction to the heart. Diagnostic tests are to get the current and full understanding of the child’s medical condition. Evaluations of the family and child (if old enough) are done; information from these interviews is used in determining whether or not the child receives a transplant. After the child has been placed on The United Network for Organ Sharing list there is nothing else to do but sit and wait for a new heart.

The only thing left for Crystal was a heart transplant. With each passing day Crystal’s family sits and waits with her at Children’s Hospital in Milwaukee, WI. At one year she got put into glasses to help her see because of a cord running over her face in the hospital and she became cross-eyed. This last May, Crystal was taken to Madison Children’s Hospital, from there she was transferred to Milwaukee. She was three at this time and she could no longer sit-up, crawl, or walk. The doctors said that for every day she lost in the hospital it would take her ten days to relearn what all she had lost by laying on her back. Late in June doctors were considering putting her on the transplant list. After tests and everything else by July 15 she was added to the United Network for Organ Sharing list. After one hundred days of being on this list Crystal’s family became worried and scared that they might not find a donor in time. The very next day their pager went off and they had a heart for Crystal. October 22, 2007 Crystal Naomi Clausen received her heart.