the Gift of Life
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WRITTEN BY: SHARON KIRKEY, NATIONAL POST
SPRING 2020 | VOLUME 30 Heart to Heart
Message & Video from the Chairman
Message from the CEO
Message from the Director of Family Relations
Partner Spotlight: OUTFRONT Media
Thank You to All Our Partners
Keep your face to the sunshine and you cannot see a shadow. Helen Keller
212 HENRY ST., VICTORIA, BC V9A 3H9 OFFICE: 250.475.1223 FAX: 250.475.1193 TOLL FREE: 1.877.777.7675 DAVIDFOSTERFOUNDATION.COM
Chen and G
Heart to Heart Kristin Chen keeps the outfit her baby was wearing that night inside a small plastic bag. It’s a soft grey, one-piece sleeper. It still has that newborn baby scent. “That’s why we put it in the bag,” Kristin said. “It still smells of her.”
Rosalie TRANSPLANT: HEART TRANSPLANT DATE: JUNE 26, 2018 HOME: ORILLIA, ON
Ailah Chen was wearing her sleeper when Kristin woke from sleep in the early morning hours of June 23, 2018 and went downstairs to check on her six-week-old newborn. Her husband, Alexsius, was asleep on the couch next to the baby’s bassinet. Alex had given Ailah her last bottle at 1:30 am before falling asleep. It was now just past 2 am. Kristin looked inside the bassinet. The baby’s colour was off. She was greyish, almost blue, not pink, and when she touched her, Ailah was cold. Kristin yelled out to Alex to call 911, and then dropped on her knees to the floor. Cradling Ailah’s body along one arm, careful to support her neck, she placed two fingers on her baby’s breastbone and started pressing down. She alternated the chest compressions with emergency breathing. Mouth-over-mouth. Mouth-over-nose. Counting, counting, counting: 30 compressions, two breaths, 30 compressions, two breaths. She kept waiting to hear the sirens, but she remembers thinking she couldn’t really hear much of anything, because it felt like her ears were ringing. Everything seemed so muffled, so far away. When the paramedics arrived, they lifted Kristin up by her arms and pulled her away from Ailah. “Save her,” she remembers screaming. “You have to save her.” CONTINUES ON PAGE 4
We Are In This Together
y thoughts are with you and your loved ones during this unpredictable and tumultuous time. I understand the continued concern that the Coronavirus (COVID-19) is causing across our communities. My heart goes out to all those who have been impacted around the globe. I want you to know that we are in this together. It is our responsibility to understand and implement social distancing and self-isolation when needed to help protect those at high-risk and with compromised immune systems. Of those at risk, are the transplant children of families we support. After receiving a life-saving organ transplant, it is mandatory to take a series of anti-rejection medications to eliminate the chance of the body rejecting the new organ. Our families
have no choice but to take the highest precautions in protecting their children. I want to personally thank and acknowledge the work and commitment of our doctors, nurses, social workers, and all medical staff that are keeping our communities safe. You are the true heroes.
Thank you for your continued support during these challenging times.
David Foster Director of Family Relations
I am asking you to help us flatten the curve which will directly affect our health care capacity and make a true difference in the future of the COVID-19 pandemic. Please be vigilant with your actions over the following months and learn the proper steps to protect yourself and those around you.
David Foster with a transplant family in Victoria, BC at the Oak Bay Beach Hotel.
Watch An Important Video Message From David Foster
A New Year and A New Decade
t is a new year and a new decade for the David Foster Foundation. As we are all facing new challenges and hardship during this season of navigating COVID-19, I cannot let this moment pass without stopping and thanking you all for the continued support of our families in need. I am left with a deep sense of gratitude for the devotion and advocacy given to the Foundation as it has truly changed the lives of many transplant families. It is in these trying times that we are reminded of the importance of relationship and human kindness. I encourage you to take time to call the people you love, connect with one another and continue to lend a helping hand, wherever possible, to those in need and at risk.
a day to day basis and now more than ever. We have the opportunity to do our part during this pandemic by abiding by the government's direction to stay home, stay safe and stay healthy. With your help, we can continue to support transplant families as their battles do not end after we overcome this pandemic.
Our families battle the concern and fear of the health of their children on
Michael Ravenhill Chief Executive Officer
Thank you for making an incredibly difficult time that much easier and thank you for making a difference.
With sincere appreciation and gratitude,
We have the opportunity to do our part during this pandemic by abiding by the government's direction to staying home, stay safe and stay healthy.
Mike and kidney transplant recipient, Aidyn, just before his first swim post-kidney transplant.
The Greatest Gift of All
s we are faced with the challenges of this world health pandemic, I hope you and your loved ones are staying healthy during this time and following the recommendations of health officials. The guidelines that the government has laid out exist to protect us all and more importantly those most vulnerable which include immunocompromised transplant children like those that the Foundation assists. By working together, I know that we will do our best to ensure the most vulnerable remain safe during these uncertain times. In August 2019, I was privileged to travel from our main office in Victoria, BC to Toronto, ON to witness the meeting of two families. A year earlier, one family had given the gift of life to the other family when they chose to donate their babyâ€™s organs. The story of their meeting was released nation-wide in February and is detailed in this newsletter starting on
page 1 and continuing on pages 4-6. I encourage you to read this truly heartfelt transplant story that the Foundation is honoured to be a part of. I would also like to extend our most sincere thanks to the Audia and Chen families that invited us to witness and document this important moment in their lives. It is our hope that this story stands as a testament to the impact that organ donation can have. As April is National Organ Donor Awareness Month, I would like to take this opportunity to encourage you to register as an organ donor and speak to your loved ones about your wishes. By registering to donate you could save as many as 8 lives, improve the quality of life for up to 75 people and benefit countless families and loved ones of those in need. To choose to be a registered organ donor is to choose to give the greatest gift of allâ€”the gift of life. Aleea speaking to a news outlet to encourage organ donor registration.
In closing, I would like to express my greatest thanks to all the medical professionals who continue to work on the frontlines against the COVID-19 pandemic. Thank you for your dedication and hard work during this time.
Aleea Dahinden Director of Family Relations
CONTINUED FROM PAGE 4
oxygen levels were low. They called a pediatrician. Get the baby to the hospital, he told them. Rosie was rushed to the local hospital, and then airlifted by helicopter to SickKids, where she would remain for the next 160 days. Tests and imaging showed there was something seriously structurally wrong with the way Rosie’s heart was put together. She had a congenital heart condition known as a single ventricle defect. She was born with only one chamber to pump all her blood. “She was at significant risk of sudden death,” said Dr. Osami Honjo, a staff cardiovascular surgeon at SickKids.
Ailah Chen's picture and blanket.
The Mississauga couple followed the ambulance in a police cruiser. At the hospital, they were taken to a tiny, separate room. Kirstin remembers alarms going off and a huge crowd near a door. “A doctor came in and she was trying to get numbers,’’ she said. What time did they go to sleep? What time did they find her? It had already been 45 minutes since “discovery,” the doctor said. “It’s not looking good.” They were taken inside the resuscitation room, where it seemed like a crowd of a thousand hovered over their baby’s body. “And I just remember grabbing her little hand and thinking of both our moms, who have passed away, and whispering, ‘Bring her back, don’t take Ailah,‘” Kristin said. Suddenly, there was a pulse in the baby’s femoral artery. There was a heartbeat. They pushed Kristin away and rushed Ailah by ambulance to Toronto’s Hospital for Sick Children, where another baby’s heart was dying.
Rosalie Guiseppina Audia’s name was added to Ontario’s heart transplant waitlist on March 5, 2018. She was 10 days old. She would wait 114 days. The Orillia baby was born at home. Her mother, Samantha, is a doula. The labour moved so quickly the midwives didn’t have time to make it to the house before Sam started pushing. Sam’s husband Brian “caught” Rosalie, their third born, in his arms. Rosie was quiet that night; she hardly cried at all. But the next day she turned a startling near navy blue when she cried during diaper changes. The midwife came. Rosie’s blood
Sam moved into Rosie’s hospital room. Brian, who runs his own roofing company, took care of their two other children, Waylon and Gia, at home, two hours away, driving the family back to Toronto on weekends. Now, split into two cities, the couple was facing sudden unexpected costs—daycare for Waylon, before and after school care for Gia. A social worker connected them with the Foundation. For Sam, it was a “lifesaver” as the Foundation assisted the family financially with costs like daycare, after school care, accommodation in Toronto, food and gas. Sam spent four months at SickKids. She never left Rosie’s side and Rosie grew sicker. Then, on the morning of June 26, a transplant doctor came into the room. There was a heart for Rosie. Relieved, excited, nervous, nauseous. Sam felt all of them at once. She and Brian also knew it meant another family was losing their child. “I’m crying tears of happiness while another mother is somewhere, crying tears of devastation,” Sam wrote on Facebook.
Ailah Chen’s resurrected heart was beating strongly on its own. The organ was recovering, but her brain, starved so long of oxygen, wasn’t. Doctors were losing signs of any measurable brain activity. The next morning Kristin and Alex were told Ailah’s brain activity was near zero. Her brain would likely never work again. “And that was the day Alex and I started talking about donation,” Kristin said. “Because they said that her brain activity is going down, and quite quickly, and that in the province of Ontario, once she is completely brain dead, she’s dead.”
I just remember grabbing her little hand and thinking of both our moms, who have passed away, and whispering, ‘Bring her back, don’t take Ailah.’ Kristin Chen, Ailah’s mom
If you somehow have found us, and you see this, just know you are not forgotten. I think about you all the time. I could never thank you enough. Your baby and your family have saved my daughter’s life.
—a post by Sam on Facebook
Heart transplant recipient, Rosalie is held by Kristin, with her husband, Alex behind her.
“We were still so hopeful, we were so beside ourselves. But the other side of me was thinking, what if? What are things we can do?” Ailah was declared brain dead later that afternoon. “Our daughter was gone,” Alex said. The baby was kept on mechanical ventilation while surgeons assessed the number and quality of organs suitable for transplant. But the IV fluids and drugs were causing swelling. “She was so small and she was ballooning with the medications,” Kristin said. Wild with heartbreak she asked the doctors, “Is there anything you can do?” They said they could take her earlier. Kristin agreed, at first. But then she asked how long it would take for surgeons to extract her baby’s heart. Because she was so small, about an hour at most, they told her. “So I said I have a request, and it might be weird, but I want my daughter to leave this world at the same time she came into it. Could they do it at 8 o’clock tonight? Could they make it so that her heart stops in her body at 8 o’clock? And they said, ‘okay. We can do that.’ Ailah was taken to the operating room around 7 pm on June 26, Kristin and Alex on each side of her stretcher, each holding one of their baby’s hands. Ailah was covered in a pink flannel blanket. When they reached a set of doors, they were given a few moments alone. “We told her how much we loved her, and that she was such a good baby,” Kristin said.
It’s easier to do a heart transplant than to fix complex congenital heart problems like Rosie’s. Surgeons take out the heart that wasn’t assembled normally and replace it with an anatomically perfect one. Honjo’s team needed about 90 minutes to get Rosie ready: One hour to do the anaesthesia induction, and 30 minutes to open her chest. “Usually we wait until the donor heart has landed,” Honjo said, “and then go on bypass and quickly take out the heart.” With Rosie, the only surprise was that the left branch of her lung vessel, her left pulmonary artery, was almost entirely blocked off. Honjo had to reconstruct it. The donor heart, however, “was perfect.” Honjo saw Rosie this week for a regular follow-up. “She still has to take immunosuppression therapy, and we have to keep an eye on this transplanted heart,” he said. “But she’s doing great. The initial outcome is fantastic.” When we visited her at home, Rosie was just getting over a cold. She has fine, curly, light-brown hair. The scars on her chest are fading. Sam has been “bubbling” Rosie this winter, keeping her mostly away from others. She is still fed by a feeding tube in her stomach, but she’s reaching milestones. She’s learning to walk; she knows where her mouth, nose, eyes and chin are. Sam, 32, and Brian, 40, know Rosie isn’t out of the woods. The anti-rejection The David Foster Foundation
Being a surrogate is something I’ve always wanted to do,” Sam said. “They saved my baby; I can’t give them back their baby, I can’t give them Ailah. But I can carry a baby for them.
Samantha Audia reacts to the story of how Ailah Chen passed away.
drugs she’ll have to remain on for life can cause liver and kidney problems. But she can expect to live at least into young adulthood.
Kristin and Samantha would find one another through social media as in Ontario, as in most jurisdictions, organ donation is strictly anonymous. The local papers followed Rosie’s transplant journey. A year after her life-saving surgery, when Sam posted a message on their “A Heart for Rosalie” Facebook page about a oneyear anniversary party last June featuring a butterfly release to honour the baby whose heart Rosie now carries, Kristin, an early childhood educator, posted a message: “I think my daughter would want me to be there.”
Sam didn’t say anything then. But she later asked Brian how he would feel if she offered to be Kristin’s surrogate. “Being a surrogate is something I’ve always wanted to do,” Sam said. “They saved my baby; I can’t give them back their baby, I can’t give them Ailah. But I can carry a baby for them.” “I had a lot of guilt issues in the beginning. But this is not out of guilt. It just feels so right. I just want to do this.” A private donor has offered to pay for Kristin and Alex to undergo in vitro fertilization. The resulting embryo would be transferred into Sam’s womb. IVF doesn’t promise a healthy baby. “There is no guarantee,” Kristin said. “But Ailah was pulled from us so fast. “There’s a hope now that we didn’t have before.”
The two families would wait to meet until last August at an emotional reunion captured by the Foundation. Kristin listened to Rosie’s heart through a stethoscope. The sun was coming in through a window behind Rosie, bathing her in light. “It was almost like a divine moment,” Kristin said. She and Alex gave Sam and Brian the blanket that covered Ailah when she was taken into the operating room. Sam and Brian gave the Chens a stuffed rabbit with an audio recording of Rosie’s heart embedded inside. They plan to share even more. Kirstin’s two pregnancies were both difficult, and when Ailah had to be delivered via emergency caesarean section, and Kristin and Alex thought their wished-for family of two children was complete, Kristin had a tubal ligation. “They never saw themselves as a one-child family,” Sam remembers Kristin telling her.
Kristin listens to her daughter's heart beating in Rosie's chest.
Click here to watch the entire video!
Sharing Postivity During these uncertain times, it is crucial to find and share positivity in our everyday routines. Our friends and very generous supporters at the Foundation for a Better Life have shared these positive images and messages to create brighter days for all.
Explore hundreds of inspiring messages at PassItOn.com
The David Foster Foundation
Helping HANDS! Thanks to our generous supporters like you, these transplant families will see better tomorrows. Liorah In December of 2018, one month after Liorah was born, she was diagnosed with biliary atresia, a rare disease that affects the liver and can be fatal. In May 2019, she was listed for a life-saving liver transplant. Liorah’s mother, Darline, was approved to be the living liver donor and a transplant was scheduled for September 2019. Unfortunately, Liorah developed pneumonia and became too sick for the scheduled transplant to take place. For two months, Liorah battled pneumonia and her liver failure grew more and more severe. Two days before Liorah’s 1st birthday, she continued to cling to life and the transplant team could no longer wait. Both mother and daughter
were rushed into surgery despite Liorah still being very sick. The liver transplant was successful and today Liorah and Darline are doing well post-transplant. The Foundation assisted the family with expenses like their rent, car insurance, food, car payments, cell phone bills, and daycare expenses while Liorah’s family cared for her during her transplant journey.
Left: Liorah 2 months post-transplant. Right: Liorah and her family at her temple presentation.
to care for Victoria-Jane while she was listed on the transplant waitlist. During this stressful time, the Foundation assisted the family with expenses like food, mortgage, gas, parking, and cell phone bills. This financial support allowed the family to focus more time on caring for Victoria-Jane while maintaining financial stability as Victoria-Jane’s father Widnyck continued to work and helped Paola care for the family’s three children.
Victoria-Jane Victoria-Jane was only five months old when she was diagnosed with cardiomyopathy, a heart disease that makes it hard for the heart to pump blood throughout her body. Sixteen months after Victoria-Jane was born, she was listed for a life-saving heart transplant. Her mother, Paola, had to stop working
was a success and now Victoria-Jane and her family are back at home. While Victoria-Jane must take daily medication, Paola says that she is full of energy and always in a good mood. As a family, Paola acknowledges that they all “appreciate life and our loved ones more” post-transplant.
Eventually, Victoria-Jane became too sick to be at home and she was admitted into CHU Sainte-Justine in Montreal. She was put on a ventricle assist device to help her heart pump blood while her family waited for the call they so desperately hoped for. After a year and a half of waiting, the family finally received the news that there was a heart available for Victoria-Jane. Paola remembers it as the “biggest gift ever”. The heart transplant
Victoria-Jane and her family.
first year as incredibly difficult as the family navigated her medical needs. Beth spent the first eight months of her life in the ICU. She received a tracheostomy when she was five months old and received oxygen through a tube for the next year and a half.
Beth When Beth was born, she was diagnosed with Bardet-Biedl Syndrome (BBS). BBS is a disease with many complications including kidney failure. Beth’s extremely low kidney function caused lung disease and her mother, Erin, remembers Beth’s
Roman Roman was born in September of 2017. His parents, Monique and Richard, noticed that he was severely jaundiced. When his jaundice did not improve, Roman was transferred from the hospital in Windsor, Ontario to a hospital in London a two-hour drive away before finally ending up at SickKids in Toronto, another two hours further away.
Beth’s health eventually started to stabilize, but it was clear that her kidneys were failing which led her father, Jared, to be assessed as a potential living kidney donor. Jared was approved as a match and the family of six relocated to Vancouver roughly 800 kilometres from their home in Prince George. Beth and Jared individually underwent successful surgeries and Beth remained in Vancouver for three months for post-transplant care. The Foundation was able to assist with the costs of food and accommodations for the family during this time. Today Beth still has many medical needs related to transplant and her BBS but her family is grateful to be at home all together.
Beth right before her life-saving kidney transplant.
Through a series of tests, the team at SickKids diagnosed him with biliary atresia. On February 12, 2018, Roman was listed for a liver transplant. Monique stayed with him at SickKids and Richard continued working back home in Windsor. Monique remembers this period as a time tinged with sadness, hopelessness, and denial but overall she was grateful that her family “had all the priceless goods – baby Roman, each other and our faith in God.” As the family continued to wait for a liver, Monique went through the assessment process to see if she could be Roman’s living liver donor and it was confirmed that she was a match. On August 16th 2018, Monique donated 20% of her liver to Roman. The transplant was successful and today he requires daily medication and routine checkups at hospitals in Windsor and Toronto but is doing well. Monique says that Roman is “an energetic snuggle bug that loves to make people smile.”
Roman pre-transplant. The David Foster Foundation
THANK YOU TO ALL OUR PARTNERS Life Legacy Members Jim & Sandi Treliving
n 2017, the David Foster Foundation and OUTFRONT Media embarked on a very special partnership through the gift of billboard space to promote and encourage organ donor awareness and registration across Canada. OUTFRONT reaches seven out of nine Canadians daily and in every major market: Vancouver, Calgary, Edmonton, Toronto, and Montreal. To date, OUTFRONT Media has impressively grown its digital billboard exposure and to date, has helped deliver over one million daily impressions for the David Foster Foundation campaigns.
Working with OUTFRONT Media has been one of the most valuable and precious partnerships since the Foundation’s inception over 30 years ago. I am thankful to have partnered with an organization that shares and demonstrates the same values and takes pride in making a difference. I look forward to continuing our partnership and taking our awareness initiatives to new heights! - David Foster, Founder & Chairman
This partnership has helped the Foundation promote countless campaigns that have shared inspiring transplant family stories, organ
donor awareness initiatives, and provided national recognition for its supporters. Many of these campaigns have captured the attention of media and communities across Canada, which has allowed the Foundation's message reach to grow exponentially.
Our partnership with OUTFRONT Media has been instrumental in sharing a very important message with Canadians and raising awareness about the importance of becoming a registered organ donor. Working with OUTFRONT Media has led to an increased level of awareness that has had people commenting on the impact our billboards have had nationwide. I can’t thank OUTFRONT Media enough for truly making a difference and creating more tomorrows for transplant families.
Walter & Maria Schneider Jim Pattison
- Michael Ravenhill, Chief Executive Officer
The Foundation is extremely grateful to partner with an organization that continues to give back by sharing important messages nationwide. Through this partnership, the Foundation is fortunate to share stories and raise awareness that shape the bright future for all transplant families.
To learn about OUTFRONT Media and its initiatives, visit outfrontmedia.ca
Newton Glassman Charitable Foundation in Partnership with Catalyst Capital Group
Read the inspiring story of the Audia and Chen families, watch an important video message from David Foster, learn about a special partnersh...
Published on Apr 16, 2020
Read the inspiring story of the Audia and Chen families, watch an important video message from David Foster, learn about a special partnersh...