Holly's Story

Holly’s story is one of courage, love and hope...


This narrative was written by Holly's mother Paula, July 17th, 2006, prior to Holly's passing.  It is a wonderful example of the rollercoaster ride of emotions that families go through with medically challenged children. 


Holly’s story is one of courage, love and hope. It is one of an ordinary family facing extraordinary challenges. It is one of many uncertainties and one of many miracles. It is about a brave little girl who brings joy to so many peoples’ lives. We, as Holly’s parents, have been asked to share some of what Holly and our family have been through over the past two and a half years.

Holly has beaten so many odds that even some of the doctors have been completely surprised. She has fought so many battles and we have been with her every step of the way. Many tears of pain have been shed and many tears of joy. It is difficult to try and write up a short summary of all that we have endured these past couple of years. We thought it best to start at the beginning by sharing some details of Holly’s birth story. However, we also thought we would include the letters we have wrote to family and friends since her birth to help others better understand the journey our family has embarked on as well as the love we have for both of our daughters.

The Birth

Six weeks before our second child was born we were told by the medical team at Sick Kids that our unborn child had a severe congenital heart defect. We were absolutely devastated and felt like our world was crashing in. We were first told we would have to deliver our baby in Toronto. Then they also informed us that they very unsure of our baby’s chances of survival and that this type of defect could have a wide range of physical and mental challenges associated with it.

On May 10th, 2004, our daughter, Holly Grace was born on a beautiful spring day. Upon her arrival at Mount Sinai hospital we were able to hold our baby girl for a few brief seconds before the specialized medical team whisked her away from us. She was immediately put on a respirator and hooked up to several other medical devices. This was a very unnerving experience to see our newborn daughter connected to machine after machine in order to save her life.

The team initially had great difficulty stabilizing her and four hours later the head doctor gravely told us, that their first attempt to transport her the short distance across the street to Sick Kids had failed because she had arrested on them. She told us they had stabilized her again but her only chance for survival was to try once again to get her to Sick Kids even though they were not certain that Holly could survive the journey. It is strange how what amounts to a very short walk could seem so very far away.

She then proceeded to ask us if we would like to have our daughter immediately baptized. During a very surreal baptismal ceremony we held our daughter’s hands for the very first time and tears were streaming down our faces. All we could do was pray. Two hours later our prayers were answered. Holly had unbelievably survived the trip to Sick Kids.

And this is just the beginning of Holly’s story…

The Journey

Today, we are thrilled to say that Holly just celebrated her second birthday. So much has happened since the day Holly came into our lives. She has undergone 3 very major open heart surgeries, not to mention, several other risky procedures and surgeries. Holly has spent months at Sick Kids hospital. She has been on and off a respirator during various stays in the intensive care unit. And when she was just 6 months old she was so gravely ill that she had to be put on a heart and lung bypass machine for 11 days. There were times when the some of the Doctors were shaking there heads wondering what else to try. Some had even given up hope for Holly but, thankfully, a few Doctors still had some tricks up there sleeves. Tricks you will find in no medical textbook. We are so truly thankful for the expertise that is available to Holly at Sick Kids Hospital, although nothing can compare with Holly’s pure determination to survive. No adult could have survived what she has been through so far. Put another way, kids are not born knowing how to quit.

Holly has required home oxygen on and off due to her low blood oxygen levels. Holly had g-tube (a gastric feeding tube) surgically inserted directly into her stomach over a year ago. It enables us to provide enough extra calories and fluid volume into Holly’s system (with a syringe and/or pump) so that we can outpace her heart’s demands on her body. This, as well as many other factors associated with her heart condition, contributes to her having great difficulty drinking or eating, even in small volumes. We rarely get a rest from daily syringing of milk or medicines and, day-after-day, it takes a toll on our energy reserves.

Even though we have told you all the medical challenges she faces, Holly is so much more that her heart condition. She is a bright, strong-willed and loving young toddler. She understands a great deal and communicates with sign language, gestures and a few words. She is babbling more and more these days and we are hoping the words will soon follow. A month ago she started to walk on her own and we are all so excited. She fills our house with joy. There is nothing more wonderful for parents to hear than our two girls playing and laughing together.

The medical teams at Sick Kids are still very uncertain about Holly’s prognosis. After each surgery we can usually expect someone to ask, “So Holly’s heart is fixed now, right?” or, “What is the plan for Holly?” The bottom line is that her heart condition is still very serious and is by no means “fixed”. She will require many more surgeries and there is very little with regards to a plan. The only plan is to try yet another surgery, hope that she survives, and then see what kind of progress may have been made. It is difficult living with so many unknowns and to have to watch Holly struggle over and over again. We always have to remind ourselves to take one day at a time and we are constantly asking for strength inner strength, both for us and our daughters. We always tell people that fear is a powerful thing, but love…. is the most powerful of all.