A Heart for Rini

At the 2014 Holt Gala and Auction in Portland, Oregon, Holt adoptive mom Andrea stood to speak. She told her story of bringing home her daughter Rini from China — a little girl with severe congenital heart disease — and the struggle to save her life. Here, Andrea again shares the story that captivated an audience of families, adoptees and Holt supporters at the Portland event, as well as her appeal to help save the lives of other children with serious heart disease… children just like Rini.

Why are we here tonight?

I am here because as I sat next to my dying child in the cardiac intensive care unit of Seattle Children’s Hospital one year ago, I made a promise to her that she would leave a legacy and I would honor it. Whether she lived or died, there would be meaning to all she had endured.  She is no more or less special in the eyes of God than any other child, no more or less worthy of a family, of hope and a future, but she survived and has a name and face and I hope that her story will inspire everyone in this room to give generously tonight so that other children may live.

Rini is our youngest child of six — five adopted from China through Holt, four with varying degrees of congenital heart disease.  Born with complex single ventricle heart disease, Rini was declining quickly as we raced to complete our adoption.  With Holt’s help and expedites granted at each step, we were ready to travel just over three months after we applied for her adoption — gratefully so, as we learned just two weeks prior to our trip that she had spent much of the prior two months in and out of the ICU of a Chinese hospital, was in severe heart failure, and her eligibility for adoption was being called into question by officials in her homeland.

On the day we were scheduled to adopt her in China, we instead learned through the tearful voice of our Holt guide, Jane Hu, that she had been readmitted to the ICU as we were flying over the Pacific.  We were taken to meet her at the hospital, where the doctor handed us a frail, sickly 22-month-old, barely able to muster the strength to cry.  We were asked if we still wished to adopt her. Of course we did!  That night, however, we learned that her adoption had been blocked.  She had been declared unadoptable. But we saw things differently. Long story very short, thanks to the fortitude and diplomacy exhibited by Jian Chen, Sue Liu, Beth Smith, Catherine Han, Jane Hu, Phoebe Xuan, Anson Su, and the entire China program staff at Holt, we were permitted to adopt Rini a few tumultuous days later.

We found our new daughter to be extremely malnourished — unable to suck, chew or swallow anything other than a few drops of formula at a time, which we administered via syringe every hour around the clock in an effort to maintain her hydration.  She shook with every heartbeat, and slept for approximately 22 hours per day.  “Please, please make it home!” I would pray, never anticipating how relative the words “stable” and “dying” really are.

She was admitted into the care of Doernbecher Children’s Hospital straight from the airport, and within two weeks we learned that she was at end-stage heart disease and inoperable.  As her caring medical team struggled to re-feed her while attempting to manage her respiratory and cardiac failure, we were counseled by hospice and our cardiology team.

We took Rini home while we prayerfully sought the next steps.  It was very clear to us every time she looked into our eyes that her time to leave this Earth had not come.  There was more to be written in her story, so nine days later, as she declined into respiratory distress, we readmitted her to the hospital with the hope that she could be supported long enough for another option to present itself.  That option was cardiac transplant, but we soon learned that transplant centers considered her level of malnourishment to be a critical contraindication to the procedure, and she was denied evaluation.

In the following four weeks, we watched as she declined. We had her handprints and footprints cast in clay. We hired a photographer to come to the hospital to take a family portrait that we feared would be our last with her. We loved her, played with her, listened as she called me “mama” for the first time, and soaked up every moment until at last, on October 16, Seattle Children’s consented to evaluating Rini’s transplant candidacy and I flew with her via Life Flight to the hospital where she was admitted into the Cardiac ICU.

Things moved so quickly.  After a week-long evaluation process, she was accepted as a high-risk cardiac transplant candidate on the same day that she went into respiratory failure and was intubated.  On that day, I looked into her eyes for what I knew would be the last time unless she received a donor heart.  The average time on the national waiting list for a pediatric heart at status 1A, the most critical status, was 3-5 months. But eight days after being listed for transplant, Rini suffered her first cardiac arrest.  Forty-eight hours later, I woke to the sounds of the alarms in her room as she arrested for the second time.  Less than half an hour later, she was on ECMO life support.  She would only be able to remain on ECMO for up to 3-4 weeks, and while we struggled to maintain the hope that a heart would come in time, we also struggled with the knowledge that her life would only be saved by the death of another family’s child.

As each day passed and she suffered complication after complication, my mind would go around and around with an unsettling reality focused on so many “if onlys.” If only she had received intervention in China. If only she hadn’t come home so malnourished. If only this, if only that, she would not be in this position of her life ticking away as we desperately hoped that she would be spared. And it wasn’t just Rini. It was never, ever just about her. During this time, I was contacted by several families that had lost the children they were waiting to adopt from China due to heart disease, thalassemia and other illnesses.  I also heard from families waiting to adopt medically fragile children, and sadly, several of those children passed away while waiting for their new families or shortly after homecoming — their little bodies too overcome by illness to survive.  As each rainy day turned dark, as another day filled with that grueling mixture of anxiety and hope passed, I was haunted by all of those left behind: all of the children with nobody to advocate for them, to hold their hand, to provide a chance at life, or to grieve their death.

We were preparing to lose our sweet baby girl. But on Tuesday, November 12, 19 days after Rini’s name appeared on the list for transplant, as rays of sunlight pierced through the clouds covering the Seattle sky, Dr. Mike McMullen, one of Seattle Children’s transplant surgeons, entered Rini’s room and said, “There is a heart for Rini.” As transplant surgeons from around the country converged on a hospital somewhere else in the U.S., where another family’s child had died, my husband and I prayed for the family whose decision changed the fates of many people on that day, including ours.  Their choice in the midst of their indescribable grief pulled Rini back from the precipice. Her story was indeed still being written.

Rini was transported to the operating room at 9:30 that evening, and at half past midnight, we watched from the window of the CICU as the ambulance transporting Rini’s donor heart arrived after its flight of over two-thousand miles.  We later learned that a short time earlier, as Rini’s team was transitioning her from ECMO life support to cardio-pulmonary bypass, our daughter’s heart had suffered its final arrest.  It seemed like it knew exactly when to finally let go.  But then, just a short time later, the heart of another family’s precious child was placed in its new home, much like an adopted child is placed into his or her new family… not without loss or sacrifice, but also with great hope.

On February 25, 2014, six months after arriving in the U.S. from China, Rini at last walked through the door of our home where she was greeted by her three older sisters and two older brothers.  Her recovery was challenging, but she has blossomed and is thriving beyond what we ever dared to imagine!

Each and every day, we marvel that our daughter is here with us: smiling, talking, dancing and playing.  But I remain haunted.  Haunted by the precious souls who did not receive their second chance.  Haunted by how precarious these children’s existences are, and by the horrific choices that their birth families must make when faced with a lack of access to medical care.  I am haunted by the faces of the children of friends and acquaintances who died before their families could reach them. I am haunted by the memory of over two-dozen medical personnel in my child’s hospital room attempting to restart her heart… how so many people were fighting for the life of one little girl while thousands of others pass away from preventable causes with nobody to fight for them. And I am haunted by the memory of the director of the Nanning Children’s Welfare Institute as he came running after us on the day we adopted our daughter. His words to our guide were, “Please ask the family to come back here and adopt another child with serious heart disease.  We have so many more just like her.”

So many more, just like her.

So that is why I am here tonight. To keep a promise that I made to my child, to her birth parents, to Holt, to her caretakers in China, to the officials who were in charge of her fate.  I do not want there to be more like her.  We cannot solve every problem, but with dedication and above all, funding, we can nourish, heal and offer hope.

It took a family donating their child’s heart to save our daughter.  But it doesn’t have to come to that for others. Please join me in donating from your hearts tonight to support Holt’s mission of providing medical intervention, nurturing and care to some of China’s most vulnerable children and families. Thank you.

Andrea | Adoptive Mom