Olivia was born on January 22, 2008. We had found out during my pregnancy that Olivia had a heart defect called AVSD (Antrioventricular Septal Defect). We didn’t know if Olivia would require immediate heart surgery and since we live in Asheville, where there are no pediatric heart surgeons, the decision was made to have me deliver Olivia at Duke University Medical Center.
Olivia was delivered on January 22 at 12:54pm and it was both the happiest and scariest moment of my life. I only got to see a glimpse of her as they rushed her away to be closely monitored. .
Olivia came into this world beating the odds and showed everyone what a strong will she has. From the time she was born, she never showed one sign of her heart defect. In fact, they were able to bring her to the room to stay with me on the final we were in the hospital. We were able to take her home, and she lived a normal happy baby life. We had frequent visits with our local cardiologist. When Olivia was ten months old, her doctor contacted Duke because something just didn’t feel right to him. He could see this defect on echo, but his concern was that she wasn’t showing any signs. It was almost too good to be true! He contacted Duke to see if they may want to do a catherization on Olivia. The thought process was to bring her in now as a healthy and strong baby and fix the defect. The proposed surgery had a 98% success rate. The plan was that within a week she would be home and no more surgeries in her future.
On December 11, 2008, we went into Duke University Medical Center with a seemingly healthy baby. I have never known fear like that day. I was able to stay with her and even went into the operating room with her until they got her sedated. About an hour and half into the surgery the nurse practitioner came and took us to a conference room. She told us that even before the surgery started, they went with a camera to look at the back of Olivia’s heart and she went into cardiac arrest. Everything that I had feared had come true; my world, as I knew it, would never be the same.
They put Olivia on ECMO (heart lung bypass machine) and took her to the PICU. They gave her a couple of days of rest and then started the process of trying to get her off the ECMO machine. I remember in the beginning that ECMO machine was the scariest thing to have to get used to, but in the end it became my best friend because it was keeping my little girl here on this earth. At one point they were able to get her off of ECMO, and she seemed to be doing really well. About two hours into it, Olivia went into cardiac arrest again. She was placed back on ECMO.
Over the course of several days and weeks, Olivia went through many procedures and surgeries to try and save her heart but nothing helped. They had already placed Olivia on the heart transplant list, but at the time the surgeon had not given up on her heart. On Christmas Day 2008 her surgeon told us there was nothing else he could do that she would have to have a transplant to survive. Her heart had suffered too much damage during the cardiac arrests and would never recover. So, we waited and prayed and waited and prayed some more. We had been told that the average maximum you could be on ECMO and it not affect your other organs was three weeks. Time was running out. On January 1, 2009, New Years Day (and I always thought that was fitting, New Year and New Beginning) exactly three weeks to the day we finally got the call that a heart had been found for our baby girl. They took her into surgery and as I stated before I just thought waiting was hard. She was in surgery for 11 hours, and the surgery was a success!
I would like to say that this was the end of hard times, but in fact it was just the beginning. Olivia’s new heart was doing great but after that surgery, we started seeing the effects on her other organs. Over time Olivia did start to improve, but it took her many months to get to that point. When something would happen, it would finally work itself out and then another organ would start failing. But over time all of that improved. Olivia spent five months in the hospital and another two months in the area to be monitored closely. So in all we were gone away from home for seven months and that is hard when you live 4 hours away. But we were so happy and blessed that we were given this second chance with our only child and it wouldn’t have mattered where we were as long as we were together.
As of today Olivia is a very active, happy five-year-old. She has had a lot of ups and downs over the years since all this happened. Olivia is the strongest child I have ever known. She has become such an inspiration to so many. Her will to fight and live is something that amazes us all. I have shared Olivia’s story with many and it has helped others going through similar circumstances. The best advice I can give others is to NEVER GIVE UP HOPE!
-Kim, Olivia's mother, recipient family