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 October 18th, 2016
On this day three years ago, I had the first of many interviews with the specialists who were evaluating Rini for transplant candidacy. At the beginning, the discussion was typical of those you’d have with any medical team when they are trying to get to know your child, except for the discussion about our resuscitation wishes for Rini.
Painful. So painful.
And then the conversation took a turn that again brought that sick feeling from the prior morning’s rounds to my body. One of the heart failure cardiologists asked me about Rini’s developmental delays and whether she had undergone any genetic testing. My walls instantly went up. I knew where she was going with this.
I had been doing my reading while tucked into my bench-bed in the back of Rini’s room. They wanted to learn whether Rini had been diagnosed with any syndromes that might lead to a disability which might render her unable to be compliant with post-transplant protocol later in life, or compromise her health.
It was devastating. The brokenness of this world just hit me at that moment – and was crushing. I have not recovered from that.
There simply are not enough organs for everyone who needs one.
Of the overwhelming percentage of Americans who say they support organ donation, only a fraction take the necessary steps to register and make their wishes known to their next of kin. And, combined with the fact that only approximately 3% of deaths result in organs that are viable for transplant, you can see how such a shortage would result. Because of this, transplant centers feel that they must make decisions as to who gets a chance and who doesn’t.
It’s cold, sterile, ugly, and one could argue that it lacks in humanity. But it is what it is.
There I was, my child’s advocate in a system trying its best under incredible pressure to provide a resource that is scarce. Where are the lines drawn? I don’t have the answer. There are over 123,000 Americans waiting for organ transplant. Every day, approximately 23 people in this country die while waiting.
Between 1995 and 2015, 1,605 children in the United States died while waiting for a heart transplant. That is not counting the children who have died waiting for lungs, kidneys, livers, and intestines.
Just like in my current work with Little Hearts Medical, when families lament that their child did not receive care in China, I feel as much sympathy for them and their children as I do for the overwhelmed and underfunded social welfare and medical systems that are drowning, but still desperately trying to do right by the children in their care.
In that moment, I did my best for my child. I told the doctor that Rini’s delays were most likely institutional in nature, that she was “normal”, and felt horrible for doing so. Later, I contacted my adoption agency social worker and asked for her to intervene on Rini’s behalf and have a local IAP (International Adoption Physician) on standby to advocate for Rini when the Neurology team came to assess her.
And yet, as I tried desperately to put Rini on the “worthy of transplant” side of the fence, I was thinking about the children of friends who have been denied transplant at various centers due to developmental disabilities. And I thought of my other complex, single ventricle child who could very well be in the position of being evaluated for transplant one day: my precious, beautiful, perfectly amazing Scarlett, who is not “normal”, who is mentally impaired and will most likely be dependent upon us for her entire life.
Will she be deemed worthy of a chance? Will she be denied? Oh there are not enough words in my vocabulary to adequately articulate the utter pain of that morning in the Quiet Room.
When it was over, I felt drained, and I felt guilt. Guilt for trying to get my child a heart (it felt competitive and greedy in a twisted way), and guilt for the fact that ultimately, if Rini were saved, it would be because someone else’s child had not been.
I alternated from riding a roller coaster of emotions to pragmatism. I felt so split between those two extremes. As I was trying to process the ethical and philosophical issues, I still needed to manage the practical and the medical.
Later that day, Rini was taken to have a dual port PICC line placed, and they opted for a caudal epidural versus sedation due to her poor ventricular function. They explained that she could not be anesthetized without being intubated, and once she was intubated she would not be able to be extubated without going into cardiac arrest. I also learned that Rini had one rather than the usual two pulmonary veins on her left side, further complicating her anatomy for transplant.
She underwent a chest CT scan and was scheduled for a cardiac MRI the following day. I also had a two hour interview with the transplant social worker who went over so much, mostly focused on post transplant care, our financial and social support systems, insurance, history of compliance with the medical care of our children, and the emotional aspects of the transplant journey.
The tentative date for the evaluation to be completed and for the committee to meet to determine whether she would be listed was Wednesday, October 23, 2013.
When the day was coming to a close and I was back in Rini’s room, I just loved on her and thanked God for having her for another day.
From October 19th, 2016
On this day three years ago, Rini’s blood was taken for the three pages worth of lab orders necessary for the evaluation. These included the PRA (panel of reactive antibodies) test, where they would learn how reactive her blood was to the general population. An ideal number is 0%, but Rini’s PRA was very high, which would make finding a compatible donor heart more difficult. The results of her Virology tests also added more to the label of “high risk transplant” that had already been assigned.
With each piece of news, my heart sank. But then someone would begin a sentence with “When she’s listed…” and my spirits would jump, only to come crashing down when another person would begin a sentence with “If she’s listed…”
Late in the morning on that day, two of the transplant cardiologists came into Rini’s room.
From my journal:
“Every so often, the roller coaster starts to fall off the tracks like it did today when two of the doctors came into the room and asked me what my understanding of the transplant process is. I told them, and they discussed with me life expectancy after transplant and the intensity of post-transplant care. The person then went on to explain very clearly what a high-risk transplant Rini would be, and how highly critical the immediate post-transplant period would be for a child like her.
The doctor then said in a very blunt way, “And you do understand that we may very well not list her. We have to protect the donor heart.”
Protect the donor heart. The donor heart. The words stung, and they have stayed with me and repeated over and over in my head all day. There it is right there. My intellectual self gets it. Rini would be a risk to that healthy donor heart. That very in-demand donor heart – and they will all get together and decide whether they want to risk a heart on her. And even though I understand the position they are in, this is my child.”
After Rini fell asleep, her nurse gently encouraged me to go for a walk outside of the hospital. It took some pushing but I agreed that it would be good to breathe fresh air and give myself a chance to have a little space from the despair of that place. So I set off for the half-mile walk to the University Village shopping center, right off the University of WA campus.
I cried a lot on that outing, but I also loved that that I was right there, in the midst of my child’s battle for her life. What an honor I feel it is to be the parent of a medically fragile child, and to be one of the people who gets to advocate, support, and love her through her struggles.
Not pursuing Rini’s adoption was never an option once the idea of becoming her mother entered my soul. Leaving her in China when her adoption was blocked was never an option either. Some might say that if we had done so, we would have saved ourselves heartache. But that opinion comes from a place that is ruled by fear. We were, and still are, ruled by hope.
The shopping center was populated by high-end stores, the type I love to browse in but rarely purchase from. I turned a corner and saw Pottery Barn Kids and walked in. I cried. Seeing the beautiful store, a paradise of all things babies and children – and wondering if Rini would ever sleep in the crib that was set up for her at our house and enjoy the comforts of home – was overwhelming.
My eyes locked on the softest, sweetest pink blanket and before I knew it, I was plunking down a ridiculous sum of money. My baby girl was going to sleep on that heavenly softness that night. I trace my love of sewing blankets for children, particularly children fighting big battles, to that day.
I came back to the hospital and Rini’s sweet nurse helped me make up her bed with her new blanket, and Rini sleeps with it still to this day.
As difficult as those days of evaluation were, they were also peaceful in many ways. I had no idea how few there were left.
From October 20th, 2016:
On this day three years ago, two additional cardiac medications were added to Rini’s regimen and she was increased to 8 liters high flow to help support her declining heart and lung function. The weekend brought some respite to the flurry of activity in and out of Rini’s room, although I was given information that helped me to better understand one of her most concerning anatomical issues as it pertained to transplant.
From my journal:
“You may recall that Rini’s enlarged heart has basically crushed her left lung and caused a hypoplastic (underdeveloped) left pulmonary artery with just a trickle of blood flowing through it. All along, I thought it was this left lung that everyone was concerned about in regard to transplant. I was partially mistaken, though. It is her right lung that is also an issue.
For almost two years, her right lung has been compensating for the absence of the left, and as such, she has a severely hyperplastic (overdeveloped) right pulmonary artery, a maze of collateral vessels, and higher than normal pulmonary vascular resistance. Her right lung is very similar in several ways to the lungs of a child with pulmonary hypertension. In her case, the blood that flows towards her left lung hits a wall and then rushes back in the opposite direction into her right lung. So although she hasn’t had high flow through her pulmonary valve as you normally would see in many children with secondary pulmonary hypertension (pulmonary hypertension stemming from underlying cardiac defects), she has some of the similar hemodynamics and the resulting damage.
The good news is, her chest CT showed fairly healthy lung tissue, which is great. But if you put a strong and healthy heart into her, that heart is not going to understand how to deal with her right lung, and therein lies a very big problem.”
While the transplant evaluation had been taking place, the CICU dietician had been working to try to keep Rini stabilized metabolically. Her prealbumin was still only 1 mg/dL above the cutoff for transplant eligibility. If it were to fall again, all bets would be off for listing her.
I came to have great admiration and compassion for that special woman. Her advocacy for Rini during rounds was something to be seen, and I often felt the burden she carried. To be responsible for the nutritional well-being of a malnourished child who was falling deeper into end stage heart failure is no easy task.
Soon Rini’s liver would join her kidneys and begin showing signs of great stress, and with each additional medication added came additional volume which would steal room in Rini’s body for fluid/feed volume. If she became fluid overloaded, it would add strain to her heart and respiratory system, and the cycle would go on and on.
From October 21st, 2016
On this day three years ago, I spent the afternoon with Rini in my arms. She was smiling, happy, blowing lots of kisses and I remember clearly how beautiful the light was in her room and how peaceful I felt. It was a beautiful time, and such a gift.