Thank you Apa family for sharing the story of your strong fighter and beautiful girl, Olivia. Her story is told by her mother, Sarah.

Our Olivia was born on September 13th, 2006 in downtown Memphis, Tn. She was born full term at 7lb, 5oz and a beautiful color pink! We were so thrilled and excited for our second daughter to be born for we had decided not to find out the sex of our child during my pregnancy. A day and half later we would be surprised by her again.

Olivia went into shock while I was nursing just at one day old. Within a few hours of her being rushed to the NICU, she was diagnosed by an on call cardiologist from Le Bonheur Children’s Hospital. Her diagnosis was Hypoplastic left heart syndrome (HLHS). Olivia’s left ventricle never developed leaving her heart nonfunctional. She would need a series of surgeries to survive. The first of the surgeries, the Norwood, would be done immediately. At one week old our baby girl was taken into a surgery room where the surgeons would begin to reroute her tiny organ in hopes of sustainable functionality. It was a long surgery but 3 weeks later our little baby was well enough to come home for the first time.

It was extremely difficult to care for Olivia. She had many medications and severe reflux; she had to be closely monitored by a pulse ox machine. My husband, Anthony I were overwhelmed with fear for our daughter’s future. Then our worst fears came to be, just 2 months after her first surgery, Olivia went into shock once again and was rushed into the heart cathererization lab to see what the problem was. Olivia was a mess, both her pulmonary arteries were blocked and were stinted in the Cath lab but the most horrifying discovery was a huge aneurysm in her right ventricle where the shunt was attached. She would need emergency surgery immediately to remove the aneurysm. That night Olivia came down with the flu, surgery was postponed.

After two weeks of touch and go waiting, she finally underwent her second open heart surgery to remove the aneurysm. While doctors were operating, the surgeons discovered the cause of all the problems; her heart was crawling with infection. She was discharged 3 weeks later with a PICC line so we could infuse antibiotics for 9 long weeks. We made it home just two days before Christmas.

A few months of stability went by and before we knew it, it was spring and the time for Olivia’s 2nd step surgery, the bi-directional Glenn. This was her first surgery at Vanderbilt because we would soon be moving home to Murfreesboro. Olivia recovered quickly, once again from the surgery and we began to plan our move back home to middle TN, in the fall.We then went a year with some “normalcy.” Olivia was able to catch up a bit on mile stones and we were able to exhale. Being home near family made a huge difference and we loved Vanderbilt children’s hospital.

When Olivia was just about 2 years old she was ready for her 3rd, and as we hoped, her final step, the Fontan. But, her pre-surgery heart cath revealed early signs of heart failure due to major regurgitation in her one and only valve. So, in the middle of hot, humid Tennessee summer, surgeons tried for a valve repair instead of her last step surgery, but 6 weeks later during her surgical follow up, her echo revealed that the surgery had failed and she was in full blown heart failure. Her only option left was a heart transplant.

On October 22nd, 2008, she was officially placed on the heart transplant list. She was able to wait at home most of the time at a 1-B status. On March 22nd, 2009, Five months to the day, we received the phone call that we had been waiting for. Olivia received her new heart the next day. It was one of the most dramatic 24 hours of our lives. Within a few weeks Olivia was discharged home. To see Olivia with pink flushed skin, for the first time since birth, was amazing! She was finally the little girl we had been waiting to see; running and have energy to play was a true miracle.

Olivia received a perfect donor heart. There is not a day that goes by that we don’t think about our donor family. Every year, at her heart anniversary, we celebrate her life and give thanks to the life that is no longer. I write a thank you letter annually to our donor family in hopes of meeting them some day.

Olivia has had 7 years of heart health. No rejection, perfect function, and minimal complications from medications. We were very grateful to have so many “catch up” years with her. She was able to go to Disney through Make a Wish, and we took the girls on many trips to the beach. She started school and took dance class and our family grew with the addition of a healthy baby boy. We were happy to be a “normal” family.

But, we forgot our daughter is not normal and never will be and we were reminded of this fact just this past December. We moved to El Paso (military) in September and shortly after, Olivia began to have strange symptoms. Over the next 8 weeks they continued to progress and I frantically took her to as many doctors as I could. We were desperate for answers and had none. Two days after Christmas I flew home to TN with all three of my children and my very sick Olivia to say goodbye to my dying father. The day after arriving I took Olivia to Vanderbilt children’s emergency room. I knew they would help her and I felt comfort as soon as we arrived. A few tests and a few hours later a resident of Olivia’s cardiologist came to talk to me. It was 2 am, my husband still in El Paso, and my father on his deathbed; I was told that Olivia needed to be admitted because of the possibility of PTLD.

A plane ride, a biopsy, and a few days later, Olivia was officially diagnosed with PTLD, post-transplant lymphoproliferative disease. It is a form of lymphoma caused by the anti-rejection medicine that is required to keep the grafted organ from being rejected by the body. The very thing that saved her life was now making her very, very sick.

After a month at Vanderbilt and her first two rounds of treatment, we flew the family back to El Paso to continue her care at home. Since then, Olivia has had a tough road with chemo but is now cancer free and we are very grateful that she is still with us.

Olivia’s journey has been sobering. We have had to come to terms with the fact that Olivia is not normal. She is fragile. Like a beautiful butterfly, their very existence is full of mystery and extreme beauty but there is a fragile and very sensitive side to this butterfly. Olivia will always have health issues. This is not the last of her time in the desert. But, she has an extraordinary testimony of God’s faithfulness to restore her time and time again and the strength she inevitably finds in Christ. She is living proof that God is still a miracle working God.

The treatment and management of CHD has come a long way in the past several decades. Just 30 years ago surgical treatment for HLHS was considered experimental. Now many children diagnosed with HLHS are able to undergo the 3 step surgery procedure and live to adulthood. Project Heart exists to fund the most promising CHD research so that children like Olivia can live long, normal, and healthy lives. We want to see children with CHD not only make it to adulthood but thrive throughout their adulthood. You can help! Donate to fund CHD research here: https://projectheart.org