What Christmas Means to Me
Condition: Dilated Cardiomyopathy
Brittany Ward’s story, as told by grandmother Joyce Ward.
Photo taken from the Winnipeg Free Press.
Early December 2004: time to get some serious Christmas shopping done.
December 9th: suddenly buying the best Christmas presents shrinks into insignificance.
Sue, our daughter-in-law, has been concerned about the health of their 15 year old daughter, Brittany, for some weeks. Finally, when climbing a short flight of stairs exhausts her accompanied by constant fatigue and laboured breathing, Sue decides to act. The appointment with her physician takes place on December 8. Sue suspects bronchitis or pneumonia; at the very least a severe flu virus. The doctor is dismissive, “a simple virus”. Sue insists on a chest x-rays, a demand that saves Brittany’s life.
December 9: Brittany goes to school as usual. Sue heads to the mall after lunch. Returning home an hour later she notes the blinking red light on the answering machine, harbouring a message she does not yet realize will change their lives forever. The disembodied voice of the doctor urgently directs that Brittany be taken to St. Boniface Hospital ER immediately. “Brittany has an enlarged heart. She is in heart failure” the message continues. Overwhelmed and panicked, Sue enlists niece, Melissa’s help to find Brittany. Melissa locates her just about to leave school for her volunteer work with mentally and physically challenged children at St. Amant Centre.
In ER, Brittany is immediately connected to a monitor showing the enlarged organ. She remains under observation until three a.m. when she is rushed by ambulance, sirens wailing, to Children’s Hospital where she comes under the care of Dr. Soni, Paediatric Cardiologist. The Ultrasound confirms an enlarged heart and irreparable damage to the left ventricle. “She needs a heart transplant. We are trying to stabilize her condition.”
Michael, a long distance transport driver, when he hears the news from Sue, is in Pittsburgh, PA. Distraught, Brittany’s dad turns his rig around for home, prepared to board a plane at a moment’s notice.
December 11: freezing drizzle; highways treacherous. We are on alert for word or Brittany’s imminent transfer to Edmonton. Michael arrives in Winnipeg late that night.
December 12: Rick, Michael’s youngest brother, picks me up to see Brittany and provide moral support. A huge, stuffed monkey lies on her hospital bed, a gift from Daddy for his princess. We stay most of the day and are elated when Dr. Soni tells us Brittany is responding to treatment and may spend Christmas at home. She will, however, need to be transferred to Edmonton in January.
December 13: Michael prepares to pick up his little girl and take her home. The address where he is to pick up a wheelchair is stuffed in his jeans pocket. He is stopped at the exit by a summons to return to the ward for a meeting with Dr. Soni. She informs them of the immediate need to transport Brittany to Edmonton.
Short-lived relief is replaced with renewed anxiety. Brittany’s condition has deteriorated alarmingly including dangerously low blood pressure. Dr. Soni is unprepared to risk any further delay. Time accelerates as arrangements are made for Michael, with only the clothes on his back, and Brittany, on a stretcher, stent in place, to be whisked away by ambulance to a closed airport, where a Lear Jet waits to take them to Stollery Children’s Centre, University of Alberta Hospital. Dr. Coe, heart transplant specialist and his expert team are waiting.
Brittany has been scared and confused since her hurried admission to St. Boniface Hospital, but so much more so when she realizes she is not going home on pass, but instead being medevaced to Stollery in Edmonton. She glances down to see her severely enlarged heart visibly beating against her chest as if to break through. She puts on her bravest face for her family to try and lessen everyone’s concerns as they “seem so sad”.
Immediately upon entering Stollery she is hooked up to a crucial IV medication, unavailable in Winnipeg Paediatrics. After arranging for Cousin Lee to look after the house and dog, Sue leaves to join Michael and Brittany. Sue has been advised to pack for a year’s stay. She and Melissa fly out at 4:30 p.m., December 14. Normal life is left behind.
Arriving in Edmonton, they go straightaway to check on Brittany at the hospital. After they are assured that all is as well as can be expected Sue takes care of the next priority which is a suitable living arrangement. She finds an apartment at Campus Towers within walking distance of the hospital and signs a lease ending April 2005.
December 16: Brittany’s heart biopsy is scheduled for 10:30 a.m. Family heart disease history search is underway. Brittany’s blood type is a rare O. The Virology lab is involved. Her changes are broken into three parts: no need for transplant, nothing will happen and the least popular being no hope. Dread!
December 18: Michael is back in Winnipeg. His employer has been able to secure a load for him near Edmonton which enables him to transport his own vehicle to that city, providing them transportation. In the meantime, bills continue to come in so Michael, given Brittany’s current state of stability, decides to take a working trip. His employer agrees to send him only on short distance drops and pickups, allowing Michael to return to the Stollery in the shortest time possible should Brittany’s condition and/or circumstances change.
Christmas Day: Michael, Sue and Robbie (Britt’s brother) gather together at Brittany’s bedside. In Manitoba, the rest of the Ward family observe the day in Altona with Great Grandma Anna. When the phone rings mid-afternoon heralding the expected call from Edmonton, everyone huddles close waiting for their turn to speak. This is the most precious gift of the day, the communing of a subdued family, anxiety palpable about Brittany’s future.
December 22: Brittany undergoes a successful three hour biopsy. The waiting continues.
December 31, 2004: New Year’s Eve, Auld Lang Syne, 2004 is finished; we still wait for a Christmas miracle.
Then it comes! The inestimable, unforgettable gift—a donor heart! It is on its way, in a specially packed cooler from Saskatchewan, by medical air ambulance.
January 5, 2005: Dr. Coe and his surgical team remove Brittany’s defective heart replacing it with the heart of the 15 year old daughter of another family. We later learn that her name was Chelsea.
Brittany is attached to a multitude of tubes that keep her new heart beating, feed her and perform the tasks her body can not yet manage on its own. Miraculously and rapidly her condition improves. Arrangements are made for her to attend school in a specially constructed classroom within the hospital setting so she can graduate with the rest of her class at Dakota High in Winnipeg in June. She is settling into the life of the hospital which includes other heart-endangered children of varying ages, including babies. Some of them make it, but sadly others do not.
Approximately a week post-surgery, although donors are supposed to be anonymous, Sue receives a call from the father of the donor. He wishes to reassure himself that the gift of his precious child’s heart will live on in another deserving girl. The priceless bequest of life, we discover later, came as the result of a suicide, the consequence of long term bullying.
January 11: Rick and I arrive in Edmonton, six days after the surgery. We are astonished to learn that Brittany is already allowed passes out of hospital. We spend time with her eating out, shopping and lounging around the apartment Michael and Sue have adopted as their temporary home.
During that weekend stay we are given the opportunity to hold Brittany’s adult fist-sized, damaged heart. We are mesmerized. Brittany’s comment: “It feels so weird!”
Finally the day in March comes when Brittany is allowed home on a weekend pass. The family gathers in festive spirit; yet another Christmas best.
When Brittany receives her final discharge in April, the celebration is on once more. She has been given a most marvellous gift, the chance at a new beginning, an unequalled treasure; we are overcome with love, gratitude and joy.
The eighth anniversary of Brittany’s heart transplant is past as of this telling. Although her heart is now normal in size, she is the adult, child-like version of Cindy Lou Who in “How the Grinch Stole Christmas”, living daily with the philosophy that no one should spend Christmas alone. Her psychological heart is huge, filled with boundless love and caring.
It is believed that a transplanted organ carries an imprint of the person from whom it is harvested. Brittany is experiencing this firsthand manifested by a craving for bananas, previously not a fruit of choice. At times her laughter has a lilt unlike any she had before and she reports feeling Chelsea’s presence daily, firmly believing she is always with her.
In conclusion, Christmas for me is not a specific day in December, but the miracle of life, of loving family and friends 365 days of the year. My caution: “Don’t take loved ones for granted; they are, each and every one, a unique, albeit sometimes flawed, amazing gift to cherish. Our lives can literally change in a heartbeat.”