Our son Luke was born February 7, 2006, at a healthy 8 lbs 9.5 oz. We were blessed with a third beautiful boy who we named Luke Michael Holmes, who joined big brothers Zakary and Max. For the first 36 hours of Luke’s life, everything was normal, he was a healthy, happy newborn baby who we absolutely adored.
The evening of February 8th, 2006 our evening nurse at the hospital came in to check on Luke’s progress. Our nurse offered to change Luke for me (I was recovering from my 3rd c-section) and then continued to do her well check for the evening. During the well check, when she was listening to Luke’s chest she heard fluid on the lungs which she was concerned about. Luke was then taken for some tests to determine what the problem was. After series of tests and Luke becoming increasingly sick it was determined that Luke needed to be transferred to the Hospital for Sick Children in Toronto for treatment.
Luke was diagnosed with Hypoplastic Left Heart Syndrome/Critical Aortic Stenosis, which in easy to understand terminology means the whole left side of Luke’s heart was small and underdeveloped including his Aortic valve, Mitral Valve and Left Ventricle (which is the pumping ventricle for blood flow to the rest of his body). At this time Luke was very sick, his body was beginning to shut down. What happened after birth, which normally happens with every newborn is that his PDA valve was closing. This valve is open in utero to provide oxygen rich blood to the body. After a baby is born this valve naturally closes and the heart starts working on its own. The problem with Luke’s heart was that the left ventricle was small and the aortic and mitral valve were not functioning properly, so with the PDA valve closing the heart could not pump oxygen rich blood to the rest of the body. These conditions combined could have been fatal if not treated.
For the first few days at Sick Kids it was very touch and go with Luke. We were preparing for the worst, that Luke would not survive. The team at SickKids worked around the clock to save him and improve his condition. Luke himself was not ready to give up and he began to respond to treatment. At 9 days of age Luke had his first procedure at Sick Kids, a balloon valvotomy to open up the aortic valve and improve blood flow. Luke began to improve daily and after a long 8 weeks at Sick Kids we were finally able to bring Luke home to his big brothers.
We continued to care for Luke at home, he continued to have health challenges along the way but we were happy to have him home with us. He continued to grow and we continued to love and cherish every moment with him. He was followed very closely by his Cardiologist, Dr. Joel Kirsh and by his Paediatrician, Dr. Michael Fox. In October 2006 it was determined that Luke’s heart was again beginning to struggle. His left ventricle was struggling to pump blood to the right ventricle and his aortic valve was under increasing pressure. The team of cardiologist, surgeons and specialists at SickKids reviewed Luke’s medical history and determined that the best course of action was a Ross Procedure, where they would replace Luke’s aortic valve with his own pulmonary valve and replace his pulmonary valve with a synthetic valve. This procedure would eliminate the pressure on the aortic valve and help the left ventricle pump blood to the right ventricle.
Luke had surgery on January 30, 2007, 1 week before his 1st birthday. This was a 6 hour, open heart procedure. I cannot even begin to describe that day, how I cried when they literally had to rip Luke out of my arms and take him away for surgery, or how for 6 hours straight I coloured in a Hello Kitty colouring book because there was no way I could focus to read anything out of a book or magazine. Then after 6 long hours, Dr. Glen Van Arsdell, Luke’s surgeon came out, told us Luke was doing well and that we could see him.
We walked once again, into the Cardiac Critical Care Unit of SickKids and I held the hand of my precious little boy who now had a 4 inch incision down the middle of his chest and tubes and wires all over his little body. I was truly terrified for the first time in my life. Luke started to improve slowly, on his first birthday, with only a few IV’s attached to his body and a oxygen prong under his nose I held him and thanked God for this precious gift we were given. Then on February 9, 2007 Luke took a turn for the worse. After a long, up hill struggle and another long 8 weeks at Sick Kids we brought Luke home once again to his big brothers. For 6 months Luke continued to improve, he was a constant joy, a happy little boy with always the biggest smile for Zakary and Max. We were again followed closely by Dr. Kirsh and Dr. Fox.
Then, in September 2007 Luke went into heart failure. His little body was struggling. Zakary was in Senior Kindergarten at a new school, making new friends and enjoying new adventures. Max was at preschool, becoming more independent, making new friends as well, both boys unaware that their little brother was in the fight for his life. Too young to understand what was going on, but deeply upset that Luke once again was in hospital.
After a series of tests it was determined that Luke’s only option was Heart Transplant. Troy and I were devastated. We lived for the past 18 months with the constant fear that Luke may not wake up in the morning, that Luke’s little heart would give out while he was sleeping. Now, we were told, that our only hope for Luke to survive was that another family would have to endure unimaginable grief.
In November 2007 Luke went through a series of tests to determine his candidacy for heart transplant. On November 26, 2007 we were told by a devastated Dr. Kirsh and team at SickKids that Luke was not able to have a heart transplant, that his little body would immediately reject a new heart. Our only option now was palliative care. So we again came home to Luke’s big brothers and tried to prepare them as best we could that Luke would not be with us forever.
We were blessed to have Luke with us for one more Christmas, then on the morning of December 28, 2007, sometime after 7 am, Luke peacefully passed away in his sleep.
I held his lifeless body in my arms for hours and tried to say goodbye. Zakary and Max kissed him and gave him little things to bring to heaven with him, our little boy was gone.
On July 16, 2009 we were blessed with another little boy, Jackson Luke (named in honour of his courageous big brother). We continue to miss Luke every day, we talk about him to Zakary and Max all the time and every night, before Jackson goes to bed, we say goodnight to Lukie, we kiss his picture and Jackson kisses the picture of the big brother he will never know but will always love.