Luke playing with his dad

The battle for Luke’s life began, in a sense, in his earliest stages of life within my womb. Between weeks five and six of gestation, it became apparent that I had hyperemisis gravidarum which is just a fancy word for severe morning sickness. The first five months of my pregnancy with Luke consisted of self-imposed bed rest, hydration replacements, and medication to take the edge off of the nausea. My poor husband looked on with feelings of helplessness. The nausea remained throughout the pregnancy but subsided dramatically around the time I was diagnosed with gestational diabetes. Luke and I qualified ourselves right in the “high-risk pregnancy” category, but we trudged on together until Luke was delivered on November 16th 2005 via emergency C-Section. It is amazing how insignificant the physical sufferings of my pregnancy were next to the love that washed over me as I held my Luke shortly after he was born. 
 
Although I had left the battlefield of physical suffering, God’s little solider, my son Luke, courageously entered it. We were unaware of Luke’s heart conditions while I was pregnant with him, and we were still unaware of them as we left the hospital to go home and even after his two-week check-up. Then God stepped in. While I was changing Luke’s diaper I noticed that he had inguinal hernias. It was the inguinal hernias and a little noticeable wheezing that Luke did while he was breathing that brought us into the doctor’s office. I will never forget the words, “He is going to have to be hospitalized.” After some tests, Luke traveled via helicopter to the Fairview University Medical Center in the Twin Cities, and all we knew at that time was that Luke had a hole in his heart. Our car ride to meet up with Luke consisted of many tears and a rosary to Our Lady of Sorrows. 
 
When we got to the hospital, we got the news that Luke had two congenital heart conditions: Truncus Arteriosus and Interrupted Aortic Arch. The doctors gave us a 50-70% chance of survival and the knowledge that our surgeon wanted her entire staff available for the surgery. We had a priest baptize and confirm Luke that very day. Then on December 5th 2005 at just three weeks of age Luke went down to the OR for open-heart surgery. For five days Luke had to be on an ECMO machine that helped his heart to beat, and after 18 days, the swelling in his body was finally at a point where the surgeons could close his chest. On Christmas Day 2005 we got to hold our Luke for the first time after his heart surgery – what a beautiful Christmas gift from the Christ-Child Himself.
 
The road became rocky over the next couple months as we waited for Luke’s heart to get stronger. Many complications accompanied the seriousness of Luke’s condition.  I am not going to mention all of the complications here, but with God’s grace and many prayers we battled on. When the doctors thought Luke was strong enough, we began to try and take Luke off ventilator support in the hopes that he could breath on his own. At that time we were also aware that Luke had several respiratory issues to battle through. The heart and the lungs are so very closely related and dependent on each other, and so, it is sometimes the case that when a child has a congenital heart defect, there may also be some respiratory issues to accompany it. The main respiratory problems Luke struggled with were an underdeveloped left lung, pulmonary stenosis that created pulmonary hypertension, and bronchial malasia. His kidneys had also taken a beating, either before or after the initial heart surgery and were unable to regulate the fluids in his body very well. Hence, the extra fluid throughout his body also put pressure on his lungs. After several attempts to take Luke off the ventilator, we realized that Luke was not going to overcome his respiratory problems on his own. Over time and with the help of some procedures and medicines he was expected to recover enough not to need the aid of a ventilator, but it was obvious he was in need of assistance until then. We decided to have the doctors perform a tracheostomy on Luke. Apparently, Luke liked that decision because when he came back from the OR, he took one look at my husband and I and gave us a huge smile. That was only the beginning of all the smiles!
 
Now, it is important to mention Luke’s budding personality. When people think of a sick child with so many physical obstacles to overcome, they do not expect that child to show the happiness that Luke did. You would think that by looking at how happy he was, that everyone should want to be sick and in a hospital. Luke was so good at turning on the charm and with love, he would just draw people to him like a magnet. Many members of the hospital staff would come in daily to see him, whether they were working with him or not, to get their “Luke-smile.” Luke loved just about anyone, and he had a way with melting heartstrings. Luke made it too irresistible not to play with him, and rumor had it, that Luke actually got the doctors to stop during the middle of rounding in his room just to play with him.  I often think that God was loving so many people just through the existence of Luke.  
 
Later on when Luke was still not making the progress needed to go home, and we were quickly approaching our anniversary of one year in the hospital, the doctors began to think that Luke’s inability to regulate the fluids in his body was due to his inadequate kidney function and not because of his heart. And so, Luke took yet another trip down to the OR to get a peritoneal dialysis catheter placed. At this point Luke was on several medications, dialysis, and a ventilator with the promise of future open-heart surgeries to replace heart tissue and pulmonary stents, and we were falling in love with him more and more each day. Through Luke, God was teaching us how to truly love someone. And Luke kept smiling all the while. 
 
After dialysis, Luke rapidly began to improve. I think he even surprised some of the doctors. On December 14th 2006 Luke was finally discharged and with the help of home nursing care, we took him home. Those days were not without their trials but again, God blessed us with 12 days at home with our precious Luke. On December 26th 2006, Luke was hospitalized with peritonitis, an infection in his peritoneal cavity. Luke recovered from the peritonitis, but we started down another road of unknown. Luke began to have unexplainable low blood pressure problems along with fevers of unknown origins. On February 19th 2007 Luke was having a bone marrow biopsy done in the hopes of finding the reason for these unknown problems that were steadily becoming more and more critical. We were hoping to find something that we could treat. During the procedure, there were some complications, and Luke began to bleed internally. They rushed him down to the OR to try to find the bleeding in the hopes of stopping it. In the OR the doctors were unable to stabilize him enough to even go in to find the bleeding. God’s mission for Luke on earth came to an end that day, and Luke, with my husband and I at his side, entered into his heavenly reward.   
 
Every moment of Luke’s 15 months of life was a blessing not only to us, as his parents, but to everyone that came in contact with him. During his whole life we marveled at the grace given him by God, manifested through the joy and love for life that just radiated through him despite his sickness and sufferings. He was an inspiration and an example to many on how to suffer and to love while suffering. It is truly amazing what God accomplishes through the smallest and what the world would consider “helpless” people. We know, now, that it was not part of God’s plan that Luke’s body be healed during this life, but in fighting to preserve his life, we gave testimony to our belief that sickness and death will not conquer us! There ishope. Now more than ever, we know that life is beautiful and that Luke was truly a hug and kiss from God. We thank God that Luke’s life, although short, blessed the world.   

Back to Congenital Heart Defects Stories

-The support, information and encouragement provided by the PPFL parents is not meant to take the place of medical advice by a medical professional. Any specific questions about care should be directed to a health care professional familiar with the situation.