When your baby needs a heart, it means waiting for another child to die

This is a story of two couples, once strangers, living two hours apart, and the heart of one baby now beating in the chest of another

Kristin Chen keeps the outfit her baby was wearing that night inside a small plastic bag. It’s a soft grey, one-piece sleeper with mini white flowers and a pink fox.

It still has that newborn baby scent. “That’s why we put it in the bag,” Kristin said. “It still smells of her.”

Ailah Chen was wearing her little fox 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, lined in cream and decorated on the outside with soft green frills. The baby’s color 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.”

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.

It can take a year to find a new heart for a baby that needs one. For the desperate parents, it means waiting for someone else’s child to die.

This is a story of two couples, once strangers, living two hours apart, and the heart of one baby now beating in the chest of another. A story of a family still shattered in grief and struggling to understand what happened, and the young mother whose baby they saved and her extraordinary offer.

“Mortality for children waiting for heart transplantation continues to be higher than for any other solid organ transplant.” — Dr. Anne Dipchand, SickKids cardiologist, writing in Annals of Cardiothoracic Surgery.

Rosalie Guiseppina Audia’s named was added to Ontario’s heart transplant wait list 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 oxygen levels were low. They called a paediatrician. 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.

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 in 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 David Foster Foundation. For Sam, it was a “lifesaver.” The non-profit organization provides financial support to families of children needing organ transplants, helping with mortgage and car payments, rent, food, parking, gas, plane tickets and other non-medical expenses. “The lives of these families literally shatter after the diagnosis,” said the foundation’s chief executive officer Michael Ravenhill. “We come to these families and say, ‘we do not want you to be worrying about all of these other things. We’re going to take all these worries away from you.’” The foundation has raised millions in support of more than 1,200 Canadian families.

Sam spent four months at SickKids. She never left Rosie’s side and Rosie grew sicker. The drug that was keeping Rosie stable by keeping a critical blood vessel open caused such excruciating bone pain, it hurt to touch her, despite the continuous morphine drip. Sam hated how swollen the medication made Rosie. Towards the end, they could barely see her eyes.

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.

They were told surgery would happen that afternoon. Later it was moved to the evening. The estimated time for surgery, they were told, would now be 8 pm.

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.

Kristin’s Anglican priest came to pray. They baptized Ailah on June 24. The nurses brought in a hand-stitched, beaded christening gown and laid it over the baby, careful of the tubes and wires.

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.”

“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.

The surgeons would recover Ailah’s kidneys, her large and small intestine, and her heart.

A Chinese tradition holds that when the mortal body dies, the spirit of the deceased hasn’t completely crossed into the afterlife. For the first seven days after death, mourners leave out incense and offerings of food. Kristin and Alex set out a small baby bottle of milk on a shrine to Ailah, three times a day. They did it for two months, until Alex felt in his heart she had passed.

The Chens don’t know where Ailah’s other organs went. “The only thing we were told was that the family that was waiting for the heart was in SickKids,” Alex 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 said having a donor in SickKids “doesn’t mean that we (also) have a recipient.” A donor heart goes to the highest priority patient across a North American network. “Obviously, if you are in close proximity and you have a high priority, this heart may go to a recipient in the same hospital. But that is really rare.”

When told the Audia’s are convinced their daughter’s heart came from an infant who died at SickKids, Honjo responded, “I can’t remember and, if I remember, I cannot answer that,” citing donor confidentiality.

But for the families, everything from timing to blood types lines up. “We have absolutely zero doubt,” Sam said. Infant heart transplant is rare — in all of Canada there were just 22 performed the year Rosie received her new heart — “and to have Ailah’s heart go to someone else and a different heart come in the same day, same time — impossible,” Sam said.

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 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.

“Infants who have a heart transplant have the best long-term outcome of any age group,” said Dr. Anne Dipchand, head of the heart transplant program at SickKids. There are children who, tragically, are never listed, simply because they won’t make it to transplant. Others die waiting. For those who make it, there is always the risk of rejection, coronary artery disease or complications from the immune suppressing drugs, like cancer. “There’s a huge chance we’re in a sweet spot now and that in the next 10 or 15 years something big is going to happen,” Sam said. She struggles with that, “but I try not to camp there.” Other adults are 20, 30 years out with the same heart. “We have no idea what to expect,” Brian said. “Even now, she’s surpassed everything they had expected for her. Where is she going to end up? We don’t know.”

“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

The heart, like no other organ, “invokes a kind of spiritual and cultural resonance,” British cultural historian Fay Bound Alberti, author of Matters of the Heart: History, Medicine and Emotion, said in an email. “For centuries, the heart was conceived as the site of the soul, the personality, the self. Its symmetrical shape — and oh, how relevant in the month of St. Valentine — has no reference to its actual structure, yet endures across time and culture.” Popular culture tells us that our hearts feel, love, and connect to one another, Bound Alberti said.  And there’s a sensory experience of that connectedness, too. “It is the physical, lived experience of the heart of another that we love — that we can feel move beneath our hand and hear when we press our head to their chest — that affirms its special status.”

Kristin and Samantha would find one another. In Ontario, as in most jurisdictions, organ donation is strictly anonymous, the belief being that confidentiality protects people from feelings of obligation, emotional issues or disappointment, researchers wrote in the journal Health Psychology Open.

Still it’s hard to ignore the existence of the other, they wrote, “and a mutually beneficial relationship may arise between parties who were strangers before.” What’s more, social media has made it easier to establish contact, especially so in cases involving babies, since they die less frequently, and media stories about babies needing transplants are so “emotive,” Bound Alberti said.

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 one-year 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.”

The two families would wait to meet until last August at an emotional reunion captured by the David Foster 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 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.

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 David Foster Foundation is featuring the families in a billboard campaign, as well a mini-documentary. You can see the Audia and Chen families meet, and hear their stories, at:

http://bit.ly/DFFHeartToHeart.