Grace’s Story

On April 1, 2008 Tony and Jaclyn Doffin learned that they would soon be blessed with triplets! Just one week later they were told “Baby B” was not healthy. Throughout the remainder of Jaclyn’s pregnancy, they continued to learn more about what was wrong with her. She was given a fetal diagnosis of hypoplastic right ventricle with tripcuspid atresia, pulmonary atresia, and aortic transposition. This meant that once Grace was born, her heart would not be able to effectively pump blood to the lungs to get oxygen. Fortunately, with a series of several surgeries, there was hope of a fairly normal lifestyle with a functioning three-chambered heart.

On Monday, September 8, 2008 Grace Lillian (Baby B) was born at 5:23am, just seconds after her brother Tyler and one minute before her sister Sophia. She weighed 3 pounds, 13 ounces and had a healthy cry. Tony and Jaclyn were overjoyed to welcome her to this world alive.

Shortly after she was born, her heart defect diagnosis was confirmed and, in addition, Grace was also diagnosed with heterotaxy syndrome. This meant that her organs were not in their correct places.

Grace remained in the NICU/PICU for 2.5 months. She was on a ventilator for approximately 2 months. The first month of her life, the doctors and nurses worked to keep her heart and lungs stable with medications and tried to get her to gain weight so that her first heart surgery would be more likely to succeed. On October 4th, Grace was baptized in the hospital in preparation for her first heart surgery the following week. After several postponements, Grace had her first open heart surgery on October 14th. It took a long time for Grace to recover from her surgery and she had several set-backs. She had abdominal surgery for a perforated colon on October 23rd. Grace struggled with learning to take a bottle and with digestion in general. Prior to her first surgery, she had really only been fed through a tube in her nose or through an IV.

Grace came home on November 22nd. Her family was ecstatic to have her there.

At home Grace worked on gaining weight and eating better and trying to keep up with her siblings. She had her second heart surgery on March 10th. Recovery went much more quickly this time and Grace came home again just three days after surgery. Grace was scheduled to have her third heart surgery, the Glenn procedure, on July 7th. Tony and Jaclyn brought her to the hospital that morning, but surgery was postponed again until the following morning. That evening Grace’s heart beat for the final time.

So those are the facts about Grace’s life, but WHO was Grace? Grace was a beautiful baby girl whose eyes lit up when she smiled. She touched the hearts of everyone who met her. Even the nurses and hospital staff adored her. They spent countless hours holding her during the time family members couldn’t be there with her. From the moment she was born we all knew there was something very special about her. She was wise way beyond her age. She would do things that no baby her age or size should be able to. She was an amazing gift. She taught us all about perseverance, patience, and being happy with what God has given you. Grace smiled through all the hurt and all the pain. We admired her courage and her strength. We miss her very much and we are proud to have been her parents. She brought us so much joy. We love her dearly. We are saddened that we only got a short ten months to be with her, but we are grateful for that time. For it is better to have loved and lost than to have never loved at all.

Tony & Jaclyn Doffin
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