Fam­i­lies united by one heart

Edmonton Journal - - NP - Sharon Kirkey

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 a.m. be­fore fall­ing asleep. It was now just past 2 a.m.

Kristin looked in­side the bassinet, lined in cream and dec­o­rated on the out­side with soft green frills. The baby’s colour was off. She was grey­ish, al­most blue, not pink, and when she touched her, Ai­lah was cold.

Kristin yelled 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. Mouthover-mouth. Mouth-over-nose. Count­ing, count­ing, count­ing: 30 com­pres­sions, two breaths, 30 com­pres­sions, two breaths. She kept wait­ing to hear the sirens, but 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 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.

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 pe­di­a­tri­cian. Get the baby to the hos­pi­tal, he told them. Rosie was rushed to the lo­cal hos­pi­tal, 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 Rosie’s heart. 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. Rosie grew sicker. The drug that was keep­ing Rosie sta­ble by keep­ing a crit­i­cal blood ves­sel open caused such ex­cru­ci­at­ing bony 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 p.m.

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, ‘OK. We can do that.’

“The only thing we were told at that point was that the fam­ily that was await­ing the heart was in Sick­kids.”

Ai­lah was taken to the op­er­at­ing room around 7 p.m. 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.

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 some of the 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 anes­the­sia 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 Au­dias 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 fol­lowup. “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.”

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 heart 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.

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 — an “ex­tra­or­di­nary touch,” Bound Al­berti said. “That way they can both share her.”

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 wished­for 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.”

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.”

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? — KRISTIN CHEN

NICK KOZAK FOR POST­MEDIA NEWS; PETER J THOMP­SON/NA­TIONAL POST

Ai­lah Chen died of sud­den in­fant death syn­drome in June 2018. Right, Ros­alie Au­dia, who turns two next month, re­ceived Ai­lah’s heart. De­spite donor con­fi­den­tial­ity, the two On­tario fam­i­lies have found one an­other.

Clock­wise from top: Rosie Au­dia with her mother Samantha and fa­ther Brian; a tat­too on Alex­sius Chen’s arm; “Ai­lah was pulled from us so fast,” said her mother Kristin Chen.

PETER J THOMP­SON/NA­TIONAL POST; NICK KOZAK FOR POST­MEDIA NEWS

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