Rini, our youngest of six children, was adopted in August of 2013 at end stage heart failure stemming from complex, single ventricle congenital heart disease. She was admitted to the hospital immediately upon arrival home and within two weeks it was determined that she was inoperable, her only hope would come through cardiac transplant. She was initially found to be ineligible, but that would change thanks to a heart failure/transplant program that chose to take a chance on hope and optimism.
Much as we owe her life to the sacrifice made by her birth family in letting her go, we also owe it to the incredible, selfless act of organ donation made by a family in the midst of the incomprehensible loss of their child.
This series is a retrospective of the weeks leading up to Rini’s transplant which took place on November 13, 2013, and it is my hope that it will help to bring awareness to the importance of registering to be an organ and tissue donor.
We all have the power to be someone else’s miracle.
From November 13th, 2016
On this day three years ago, strangers who chose courage and compassion saved Rini’s life. If they had not chosen to donate life on that day, there is no doubt that Rini would not have survived. Rini was the sickest of the sick, at the very end of end stage heart failure. Her team later told us that they had discussed just a couple of days prior that they would take any heart for her if we had consented, no matter how damaged, and they categorized her as being “the sickest 10% of the sickest 10%” of children they have cared for. Even if a heart were expected to be temporary and act as a bridge to a better functioning one, they would have to take it.
She was that sick. She had no options left.
Eric and I had also been offered a reprieve of sorts. As Eric said to me today, “From the minute we chose to adopt Rini, there was a relentlessness, an anxiety-filled pressure to get over the next hurdle: get to China in time; get the blocked adoption pushed through; get her home alive; get her to transplant evaluation; get her through it; get her listed and on and on.” As each day passed, the hurdles came at her faster and faster. And then all of a sudden, the race had stopped. Rini was in the OR; we had brought her as far as we could as her earthly parents, and now there was nothing more for us to do. We felt helpless. We felt relieved.
We were kept updated by the transplant coordinators, and a bit after midnight we were told that Rini’s new heart would soon be arriving at the hospital. We watched from the end of the CICU hallway that looks over the Emergency Room entrance and at half after midnight, we heard a distant siren wailing and soon the ambulance came into sight.
I can’t describe the feeling of looking down and realizing that within that vehicle was a human heart, another family’s child’s heart, given with love, hope, and generosity to ours.
I have often wondered what those driving on I-5 thought that night when they saw the plane landing at Boeing Field. Probably nothing. It was just another plane, right? And what about the people living near the hospital that heard the siren. Were they irritated? Did the siren piercing the night air disrupt their sleep? Did anyone imagine the miracle taking place, that there was a heart inside of that ambulance bound for the hospital to breathe life into a waiting child?
Perhaps if we all looked at the world differently and imagined all of the miracles taking place right this moment, every moment, and that we are all a part of an interwoven dance, perhaps then we’d be kinder, more patient, and a lot more tolerant of one another.
And as the relentless bickering in our world continues, driving us to throw our hands up and declare, “I’m done with this craziness!” we can remember the selfless, incredible generosity taking place between strangers through the act known as organ donation.
In the OR around midnight, Rini’s precious birth heart communicated and let it be known that it had taken her as far as it could. As they were transitioning her from ECMO to cardiopulmonary bypass, her beautiful heart that was created by a man and woman we will most likely never meet and nurtured in her birth mother’s womb, suddenly stopped beating. The OR nurses later told us that it made their hair stand on end to see her heart so still. There was no movement whatsoever, no final electrical impulses causing spasms, no struggle to keep going; nothing but absolute stillness.
Around 3:30 am, Rini’s transplant surgeon and one of the heart failure/transplant cardiologists met us in the family lounge to update us on the transplant progress. Her new heart was in, and the OR team, including another transplant surgeon, was running some trials on the heart. Dr. McMullen said that lifting Rini’s birth heart out of her chest was like lifting a brick. I like to imagine Jesus there, with His hands helping to lift her brave heart out of her chest.
And I wonder if somewhere in Nanning, China, her birth parents sensed something. It is they who gave her life and struggled for months to provide her with medical care. Could they feel when the heart they created was removed from their daughter’s body? Eric and I both grieved in the months after transplant for that primal piece of Rini’s birth parents that was no longer with her.
Dr. McMullen also said that they were quite surprised by just how underdeveloped her left lung was. It appeared to not have developed past early infancy, leading them to suspect that a congenital defect was at play along with the fact that it had been crushed under her enormous heart. There were great concerns about how both lungs would respond to the new heart, and particularly her severely hypoplastic left pulmonary artery.
They returned to the OR and we returned to Rini’s room, where Eric slept and I knit. Over the next six hours, Rini’s heart struggled mightily in the OR. The ischemic time was significantly outside the normally accepted limits. In other words, from clamping the arteries in the donor to unclamping in Rini was hours longer than is typically accepted.
Although they couldn’t tell us anything, we knew that meant that her heart had traveled from very far, and later we would learn that it was from a place over 2,000 miles away. This also supported the idea that other transplant teams had declined this particular heart for patients in their care. Hearts are first offered to Status 1A patients in the region of the heart’s origin. If no suitable match is found or if a transplant surgeon declines the heart, it is then offered to the next suitable match. UNOS has a system for determining which order regions are looked at when attempting to find a match when one is not found/accepted in the region of the heart’s origin.
Rini’s new heart was struggling to beat, so the decision was made to place her back on ECMO, and at almost 10am on November 13, 2013, Rini was transported to her CICU room with an angel’s heart in her still-open chest.
Our reprieve was short lived, for now Rini’s fight began again in earnest. She had a new heart and another chance at life, but it would not come easily. Rini would spend another three months in the hospital, all but one week of it in the CICU, and would have multiple re-hospitalizations of varying lengths in the year following discharge.
My parents had arrived from Los Angeles, and by late afternoon I began experiencing auditory hallucinations and a fatigue unlike anything I had ever felt. Eric and the ICU coordinator arranged for a sleep room for me, which are reserved for parents whose children are on ECMO or in the NICU. I settled into my room around 6pm, with my parents and Eric at Rini’s bedside, and proceeded to sleep for the next 18 hours.
On this day four years ago, another family’s heartbreak, or rather, another family’s choice in the midst their heartbreak, saved the life of our child. I, along with my family, have continued to honor the promise we made to Rini, and to the child whose heart has found a home within her. Our work did not stop the day Rini received her heart. We did not breath a sigh of relief and say, “Phew! Our child survived! Now we can get back to a normal life!” In fact, I’ve become very fond of saying, “Normal is overrated.”
The anxiety, struggles, and pain have fortified us and opened up a new world of peace, joy, and richness. Advocating for CHD children, helping to provide for their care through our charitable organization’s work, assisting in family preservation, mentoring families considering the adoption of CHD children, being a part of organ donation advocacy, and partnering with multiple not-for-profits and medical facilities in fundraising for not only CHD children, but for children and families facing big battles of many kinds, has brought us a life we never could have imagined
Taking care of Rini and her new heart is a privilege. Navigating the emotional complexities of being an organ recipient can be challenging, and we are grateful for the support of Rini’s Transplant team, including a full time child psychologist on staff, as we have introduced her to the story of where her new heart came from.
Eric and I, along with our two oldest children, visited Rini’s birth heart in the pathology lab one month after her transplant. We were told that they would always keep it there, so that it can be studied by those who wish to and used in the training of medical students. It is exceedingly rare to have a specimen of a single ventricle heart with multiple, complex anomalies at end stage failure that had not undergone any surgical interventions. We take Rini to visit her heart every year. She has held it in her hands, while her strong new heart beats within her.
Thank you so much for sharing in Rini’s story. I know for many it is not an easy story to read and may tap into some people’s fears regarding what the future may hold for their own child, or for a child they may be considering the adoption of. For those families, I believe you are far more capable than you may know. You are braver than you know. You can tolerate far more than you know.
But for some, you may simply wish not to venture into this world. As courageous as it is to choose an unknown path, it is also brave to voice and own your own limitations. It’s okay to choose a different path. But I implore you to do your soul searching before begin reviewing child files. Children like Rini are living on borrowed time. They cannot afford to wait.
So many people are waiting for a chance at life through organ and tissue donation (approximately 123,000 are on the national transplant list right now), so please consider registering to be a donor at www.organdonor.gov and be sure to notify your family of your wishes. Remember, we all have the power to be a hero!
What a world it would be if we looked with love upon every stranger’s face and thought, “One of us may save the other’s life someday.”
“Thank you” seems so feeble in response to all you’ve experienced and the powerful writing in this series. I recall when this was happening, but was still breathless with each installment in NHBO.
The testimony of survival is phenomenal, but I can’t imagine how inspired and, yes, comforted, parents of children with life threatening medical circumstances are to find your text.
I’m sharing the epilogue about organ donation. God bless your family and hug your miracle Rini for all the strangers grateful for her life. Selah.
Thank you for sharing your story, it was amazing, sad, and beautiful all at once. 💓💓
I don’t know how to say ‘thank you’ for sharing your story. You have offered me the opportunity to not only pray for Rini and your family but also for families similar to yours all over the world who are praying for their baby/child’s heart; for those who are saying goodbye too soon to one they will forever love; for doctors, nurses and all who care for children and their families; and for those precious CHD babies waiting in China and around the world for a family, a heart…a miracle.
Thank you for sharing your story so that many of us now know how to pray more specifically and love more deeply.
Continuing to pray for your precious Rini and your family
Beautiful story. Thank you for sharing and for giving such wonderful advice at the end. We are all capable of more than we think I’m sure. What a blessing you are to others because of what you have been through and what you’ve done with that experience.