Sydney was born on March 12 with Hypoplastic Left Heart Syndrome (HLHS), meaning the left side of her heart did not fully develop. Her pulmonary veins (bring the blood from the lungs to the heart) were obstructed at birth, which required her to need emergency open heart surgery within the first few hours of her life. She was also born with a condition called Heterotaxy, which is linked directly to HLHS. Heterotaxy means that some organs are located in the wrong position or could have been missing. For example, Sydney’s liver was located in her upper abdomen instead of being on the right side of her abdomen and she was born without a spleen. She spent four days on life support to give her heart and lungs time to rest and heal after her first open heart surgery. She then required two additional surgeries and one more open heart surgery to help correct the blood flow of her heart. She still needed to have at least two more open heart surgeries but unfortunately her recovery was very complicated and she had many challenges to overcome. She got an infection in her heart that required about 10 weeks of antibiotics and her kidneys were unable to work as hard as they needed to clear all the medications out of her system. Eventually her kidneys started to fail and she required peritoneal dialysis. She was breathing without a breathing tube for the last month of her life but sadly her oxygen needs started to increase and she needed to have a tracheotomy placed in the near future. The doctors were also starting to discuss her need for the next heart surgery. Then on the evening of September 13th Sydney vomited and it went down her airway. This caused her to go into respiratory distress and as a result her heart stopped the morning of September 14th.
Sydney was given a 25-33 percent chance of survival to the age of one. Sadly we lost her at the age of six months and two days old. She fought incredibly hard and we are forever proud of her strength and bravery. In the short amount of time she was with us, Sydney touched the lives of many people. She brought us so much hope and joy. She received the nickname “Birdie” because of the way she would drink her milk and her fluffy, soft hair. Sydney opened her eyes when she heard mommy, daddy and big sister’s voices. She was learning how to sit up and play with a rattle. She especially loved being held and snuggled. We are so thankful for the time we had with her, even though it will never feel like enough. Sydney will never be forgotten. We miss her and love her so much. We find peace that she is no longer suffering and can now rest and play freely.
Over 1.3 million Americans alive today have some form of congenital heart defect (CHD). In the United States about 40,000 children are born with a heart defect each year. CHDs are the most common types of birth defects. The odds of a healthy family having a child with a heart defect are 1 out of 100. There are many different types of heart defects; Sydney had multiple heart defects that were very rare. The exact cause of most heart defects is unknown and still being researched.