Luke's Story

If you would like to start reading posts from the beginning of Luke's journey, you can click here.


From the day I met my husband for the first time, I could tell that there were two things that were obviously never going to changed about him...he loved the Lord with all his heart and more than anything, he wanted to be a father. Benson and I knew before we were married that God was calling us to be parents. There was nothing we wanted more than to have children to call our own. After being married a little over a year, we were overjoyed to find that I was pregnant (October 2009). My pregnancy was the most amazing experience of my life. I was never sick, never in pain and rarely tired. I love every single second of it.

[ 26 weeks pregnant ]


At 24 weeks, we went in for our anatomy ultrasound where we learned that our sweet baby was definately a BOY! The ultrasound tech had a hard time getting a good picture of our baby's heart but she assured us that everything looked perfect and not to worry - we would check it again at our next appointment. However, at our next appointment, our son decided he would not cooperate and once again the sonographer had a difficult time finding a clear view of his heart. After reviewing the images, our doctor told us again that everything was fine but wanted to send us to Lexington for more in depth scans to rule out anything - just in case.

[3D ultrasound of our baby's face]


At 30 weeks, we were sent to St. Joseph Hospital in Lexington. I planned for a quick doctor's appointment and a day full of shopping and eating out with my husband. Never once had the thought of any complications ever crossed my mind. Shortly into our ultrasound, the doctor told us the news that changed our lives forever - our son would be born with Hypoplastic Left Heart Syndrome. HLHS is one of the most severe CHDs. It meant that our son would be born with only half of his heart fully developed and he would need a series of three surgeries in order to give him any chance of survival.

In that moment, our dreams changed. We went from preparing a nursery to bring our baby home to - to preparing to stay in the hospital for weeks or even months. We began researching and finding other heart families online. We had two, even three appointments per week with pediatric cardiologists and high risk OB's to get ready for the delivery of our baby...yet, even the most knowledgable of doctors could not tell us exactly what to be prepared for.



[comparison of normal heart vs. hypoplastic left heart]



At this time, we still had not chosen a name for our son. However, after finding out about his heart...we turned to scripture and found the verse that we built our prayers and lives around: Luke 1:37..."For nothing is impossible with God."


[ maternity pictures at 34 weeks ]


Since Luke's heart was not compromised in utero - a cesearean was not necessary. On June 29, 2010, I was induced in Louisville, KY. Later that evening, Luke Aaron Sexton was born into this world weighing 6lbs 10oz and measuring 21.5 inches long. He came out with a short cry - my husband held him for a brief minute but it became obvious very quickly that Luke's condition was declining. In a matter of minutes, he was becoming unresponsive and extremely dusky. I held Luke for a few seconds, kissed his forehead and told him I loved him before he was taken immediately to the NICU. That would be the first and last time I would ever see my son with no tubes, wires or incisions.


[ Luke's birth 6.29.10 ]


My husband and father followed Luke to the NICU. In a matter of just a few hours, doctors were puzzled at Luke's condition. Through echocardiograms, they could tell that Luke not only had Hypoplastic Left Heart but a multitude of other defects as well. His condition was worsening by the second - so a decision was made to put Luke on a type of emergency life support called ECMO when he was just 3 hours old.


[ the ECMO machine that kept Luke alive ]


We were faced with many difficult decisions regarding Luke's condition. Just a few hours later, a heart catherization was conducted and doctors were still unsure of exactly what the best option might be to treat our son. Doctors knew the only way to give him a chance at life was to take him into surgery immediately, but could give us very little idea as to what the prognosis or survival rate would be. We could choose to go ahead with surgery or do nothing. After praying and crying together, Benson and I knew that we had to give our son every chance to live we possibly could.


[ Luke before surgery ]


At just two days old, our son underwent open heart surgery. Our surgeons attempted to perform the Norwood Procedure but as they took our son's heart out of his chest and turned it over - they realized why Luke was so much sicker than most HLHS babies. As bad as they thought his heart was before surgery, it was far worse than they had ever seen or experienced before. Luke's pulmonary veins, that allowed blood to flow back into his heart, were so tiny there was no way his body could receive oxygen. Many surgeons would have given up in that moment, however, our doctors repaired Luke's heart the best they could. It is a miracle that our son made it out of the operating room that day.


[ Luke right after surgery ]


The prognosis was very grim, but our son continued to fight. Each day was a battle of regulating blood gases and fluid amounts, however, our son continued to surprise doctors. He was still living off ECMO support, but was improving each day as his swelling went down and his heart function seemed to be as good as could be expected.

During this time, Benson and I were updating this blog to keep friends and families aware of what was going on with Luke each day and specific ways they could pray for our baby. Many people began posting prayers on facebook, organizing meetings, and holding fundraising events for Luke and our family. The love and support that was being poured out on our family was overwhelming! We began hearing stories of people accepting Christ as their Savior through reading our story...parents and children praying together for the first time...husband and wives reconciling...families coming together. In just 12 days, our blog had over 200,000 hits from all across the world. As we cried out in prayer for our son to be healed, the Lord was moving in a powerful way and using Luke's story to literally change the world.


[ the open heart of a fighter]

[ our view of our sweet boy ]


[ the tiny hands that helped change the world ]


After many days of small improvements, our son's condition took a turn for the worse. On July 9th for reasons that doctors still cannot explain, Luke's body stopped circulating properly. In the matter of just a few hours, our son lost all bloodflow to his arms and legs. It was obvious that he was in pain and doctors told us that even if Luke survived off ECMO support, the damage done to his tissues was so severe that they would have to amputate both arms and both legs. Our doctor told us that there was nothing more that could be done and that we didn't need to make a decision - that Luke's body had made the decision for us.

Our last few hours with our son were so incrediably special. Doctors and nurses removed Luke's tubes so we could finally see his sweet face. I washed and combed his beautiful head of hair and sat beside him for hours, memorizing every inch of him that I could. We called in our family, friends and pastors to gather around us in Luke's bed as we sang and cried out to God. As we dedicated our baby to the Lord, the Holy Spirit filled every inch of the entire room.





Our families took turns holding Luke. Benson and I both sat for hours with him in our arms, singing and talking to him...telling him how beautiful Heaven would be and how much we would miss him. Finally, when we were ready, doctors disconnected the ECMO machine. Our son lived 45 minutes on his own before going to Heaven. Benson sang "I Will Rise" as Luke took his last breath just after midnight on July 10th. As painful as that moment was, I consider it an honor to have been able to hold my son when Jesus healed his heart forever. There is no greater joy than knowing that our sweet Luke will never suffer and never know pain because he is safe in the arms of my Savior and that someday, we will see him again.

Our son taught us what it meant to pray with reckless abandon...to dare to believe God for the impossible...and to see every day as a gift. While God may not have answered our prayers in the way we had hoped, He was faithful in making the impossible possible through our son's life. Our God went beyond our expectations and did not just heal our son for a season, but gave him a new heart and a healing that will last for eternity. The twelve days I spent by Luke's side and the nine months I shared with him inside my womb have helped me realize the importance of living each day to the full and what it means to find comfort, peace and understanding in my Father's arms. While we miss our son more with every passing second, all the pain in the world could never come compare to the joy we have found in calling ourselves Luke's parents...I am so very blessed to call him mine.


Luke Aaron Sexton
6.29.10 - 7.10.10

"For nothing is impossible with God."