Our featured cherub of the week is Chris Cavalier. Chris is a 32 year old survivor of CDH. His CDH story can be found on his family’s website at http://ecmosurvivor.com. A book about him has also been published and is available through Amazon and in stores at Barnes and Noble, the title is “Alive by Grace: A Mother’s Story with a Message of Hope from Christopher.”
Here is an excerpt of Christopher’s story, written by his mom, Suzanne Cavalier:
“A Smooth Sea Never Made a Skilled Sailor”
-Franklin D. Roosevelt
This is my “Smooth Sailor,” Christopher.
“Gravely ill.” These were the words used to describe my first child shortly after his birth on August 21, 1986. I was at the hospital for only fifteen minutes when a nurse detected fetal distress. The doctor entered the room and immediately ordered a cesarean section. My only thought was “quick! deliver my baby and everything will be fine.” The horrified look on my husband’s face convinced me that this would not be the case. Moments later our newborn son arrived. Before I could touch him, however, he was whisked off to the intensive care nursery. Moments later, our son was born and diagnosed with a congenital diaphragmatic hernia (CDH). Surgery was performed that evening to repair his diaphragm, but we were told that it would not be enough. Christopher needed a relatively new treatment called ECMO (Extracorporeal membrane oxygenation) and the only hospital that accepted him was Boston Children’s Hospital. We gratefully consented and the transport team arrived shortly after. The doctors told me Christopher had a 2% chance to survive the flight. Then they left. We put our baby in the hands of strangers and in the arms of God, and away they went. The plane took off with my newborn baby at 11pm. At 5 o’clock the next morning my husband and I received a phone call from the ECMO director telling us that Christopher had been successfully put on ECMO. We knew in our hearts that everything would be okay.
Thanks to ECMO, the surgeons were able to keep Christopher alive while they operated on his diaphragm. Christopher smoothly transitioned off of ECMO just seven days after the start of his treatment, becoming the first CDH baby successfully treated by ECMO at Boston Children’s Hospital. The nurses threw him a “Smooth Sailing” party to celebrate his survival. His nickname, the smooth sailor, has stuck ever since.
We thought the worst was over, but it was just the beginning of a long roller coaster for all of us. Over the following three months we rushed Christopher to the emergency room 18 times, mostly for congestive heart failure. Needless to say, these were extremely difficult times for all of us. Besides always being sick, Christopher never slept, he was extremely irritable, and he vomited at every feeding. He was diagnosed with a hypoplastic left lung, pulmonary artery hypertension, reflux, hydrocephalus, scoliosis, an enlarged heart, and an atrial septal defect. He was never home for more than five days before going into heart failure. “Back to Boston” became a popular phrase with my husband and I, and it eventually took a toll on our marriage and finances. I would stay with my son 250 miles away, while my husband (Big Chris) worked back home to pay the enormous medical bills and travel expenses. We were willing to do whatever was necessary for our son and we knew that being at Boston Children’s Hospital was our best choice.
At seven months Christopher’s condition remained extremely poor. His physicians told us that the only way he would survive is if he received a heart and lung transplant. We were devastated. At this point we were drained mentally, physically, and spiritually. I began to question God’s will for my baby. We had already watched our son go through more than we believed he could take. Still, we were not going to give up, nor were his doctors. Most importantly, neither was Christopher. He was a fighter all the way. Christopher bounced back so quickly from catastrophic illness, time after time, that everyone he came in contact with could not help but be amazed. It was the sparkle in his eye, his warm smile, and his determination to live that kept us all going.
As an experimental procedure, Christopher was put on a negative pressure ventilator, also known as an iron lung. Within a few days his condition slowly, finally, began to improve. After a two-month stay in Boston we brought our little miracle home, along with the iron lung. At thistime we finally qualified for in-home nursing assistance. Christopher was sedated and put into “the tank” every evening for the next eight months. Our house was turned into a miniature intensive care unit, complete with a mist tent, apnea monitor, suction machine, nebulizer, feeding pump, and iron lung. Though it was far from easy, it was a relief to be home together, where we had the support of our family and friends.
At the age of 15 months he was able to survive without a ventilator. We could finally enjoy our beautiful son, who at the time was already walking and talking. However, this was hardly the end of Christopher’s hardship. His school years brought more challenges, but through it all he never lost his faith in God.
Christopher had an extraordinary ability of overcoming not only physical distress, but also emotional. After everything he had been through it was a miracle he was able to live a normal life. I, on the other hand, suffered from post-traumatic stress disorder (PTSD). Constantly fearing his future and haunted by memories of his past, I was plagued with anxiety. I sought counseling for myself and began dealing with these issues. My friends and family did not understand; I was often told to leave the past behind me and to move forward, but a part of me did not want to forget. My counselor helped me to perceive that even though Christopher’s future was uncertain, my experience and knowledge were invaluable to others going through similar hardships. Thus, I began doing what I could to offer that experience back to the community. At an annual ECMO reunion in Boston I created an ECMO parent support group. This led to a bi-monthly newsletter, quarterly meetings in Boston, and friendships with other ECMO families.
When Christopher turned 10 years old I started putting the story down on paper. Writing my recollections was a tremendous process of growth and healing. These memories were painful to recall at times, but I endured because I felt strongly about preserving the experiences so that I could embrace it and others could learn from it. I wanted health professionals to be able to recognize the extent of their influence on a child and his family, even years down the road. Some of Christopher’s nurses and doctors were an absolute blessing; angels sent to watch over my baby. Others made me question humanity. Now, thirty years after Christopher was born, I am finishing my memoir of his childhood and establishing this website in order to share my story and support.
Christopher truly was a medical miracle, who paved the way for others to follow. I hope that other children with catastrophic illness and their parents will read this and know that they are not alone, and that there is hope for a normal life. Never give up hope. Our lives have much greater meaning than we may be able to appreciate in the moment. Success comes in due time, not necessarily our time.
A message from Christopher: “Even when it feels like your life has come to an end there is no reason to give up. You have to take the problems you were dealt and find some way to overcome them. If you cannot overcome your hardships, push through them until they are over. Look for motivation in whatever form you can, even if that motivation sounds insane. Problems do eventually end and even if they don’t, there is always a way to manage them.
There is a positive side to taking on problems in life. Overcoming challenges makes you a much more capable and resourceful person. Each obstacle requires you to learn a new set of skills, and to develop a new awareness of people and life. Once you have finally made it through your personal tribulation, you will be able to leave the destruction behind and keep the gifts it has given you for the rest of your life.”
A video to watch,