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.
Donate Life!
From October 22nd, 2016
On this day three years ago, it was the day before the transplant committee was scheduled to meet and we were overwrought. Our anxiety was palpable. We had been warned that if there was dissention within the group, further testing would be ordered which would drag the transplant evaluation out for several more days. Neurology had come by to examine Rini and I was so angry with myself and filled with worry for not having been there (I had gone for a walk while she was napping), as I was so concerned about how they might interpret her institutional delays.
Her blood work uncovered a thyroid problem, and I learned that she had lost over two pounds in less than a week.
I’ve gained so much knowledge over the past three years, not only through my experiences with Rini and our other CHD children, but also through my job at Little Hearts Medical. I clearly recognize that while in the midst of those emotionally charged days I really had no idea just how sick Rini was. It sounds ridiculous, I know. I was given slices of information but I lacked the understanding to piece them together. I liken it to constructing a jigsaw puzzle without having seen what the finished product will look like. It was only when a critical event was upon her that I grasped a fuller picture.
And even to this day when we take her to Seattle for her transplant clinics every three months, invariably someone from her team will mention another tidbit of information that we hadn’t heard before, or make a comment illustrating their astonishment that she survived.
One of the most comforting aspects of being at a transplant center that deals in such a high volume of cases (Seattle Children’s has one of the highest transplant volumes in the U.S.) is that they’ve seen a huge variety of cases. Conversely, that can also be unnerving. When, day in and day out, a program cares for the sickest of the sick and they’ve witnessed everything that such children can throw at them, they’re not shocked or surprised very easily and they’ve learned that sometimes children react in myriad ways. As such, trying to read their expressions yields no clues and every tiny bit of detail isn’t shared unless they have hard evidence of where something is trending.
At first we looked to their faces to determine whether we should be worried or not. That was fruitless, as they took everything in stride. Even during Rini’s cardiac arrests there was control within the chaos. It took some time, but Eric and I finally learned to just ask the hard questions. Once we did so, Rini’s team was more than willing to sit down and spell it out for us. But I wasn’t there yet, and because of that I was blind to the fact that Rini was beginning her final decline.
On the night of the 22nd, she was unable to be soothed. Normally she was ready to fall asleep around 9pm, but on that night she did not want to lie down. Over the prior two weeks she could only tolerate sitting up for ten minutes at most, but on that night she simply wouldn’t allow us to place her in a reclining position. She was anxious and very demanding, and God forgive me, I remember at one point late into the night becoming momentarily irritated. I was so tired and when I would attempt to sit down, even on the arm of the chair next to her crib, she would screech. She figured out that if she took the washcloth off of her head and threw it out of the crib and then pointed and yelled for it she could keep me perpetually on my feet, which is exactly what happened.
I didn’t see it. I didn’t realize it. Rini was terrified.
Rini was dying.
Her breathing grew increasingly labored as the night wore on, tachycardia set in, and as darkness turned to dawn there were an ever-increasing number of people moving in and out of her room. I still didn’t comprehend what was happening. I didn’t ask. Why? I don’t know. Looking back, I believe that I thought she had time.
It was incomprehensible to me that she might be nearing the end of her life already. After all, if she was listed for transplant the average wait time for a heart even at the most critical listing status was 3-5 months. Eric and I were so focused on achieving the goal of getting her a chance at evaluation followed by getting her listed, that neither of us thought beyond that to ask a seemingly simple question: would she survive to transplant?
This video is one that I didn’t know existed until two weeks ago. I’ve looked through the photos and videos from those months countless times, but I never watched this one. When I was searching the photo/video file for October 22, 2013, there it was.
I cried when I watched it, for hindsight allowed me to see what I didn’t see that night: a child who had just a few more hours before she was on the precipice of cardiac arrest. Her eyes. Oh her eyes! And the pallor of her skin, her breathing, and the little gulp for air.
Right there you can see a child fighting for her life. And yet look at her strength. I see determination. I see life.
Rini would astonish all of us time and time again with her will. But ultimately the will to live will only propel life forward for a finite amount of time. Rini’s only hope would lie in a decision to be made the following evening and after that, it would depend on a choice made by strangers over two thousand miles away.
From October 23rd, 2016
On this day three years ago, my heart broke. As dawn arrived, one of the cardiac critical care physicians entered the room and told me that Rini was in respiratory failure. They placed her on CPAP and said they would monitor her for an hour or two to see if it made a positive dent in her numbers, but there was no improvement. Her respiration continued to decline and her tachycardia grew worse.
I was then told by one of the cardiac critical care physicians that she needed to be intubated as soon as possible. At that moment, I jumped on board the crazy train and told him that I wouldn’t allow it. When he asked me why, I said that the transplant committee hadn’t made their decision yet. If the decision was made not to list her, I wanted to take Rini to our home to die surrounded by her family, not in a hospital. I knew that in Rini’s case, intubation was an end stage intervention, not a transitory one.
I knew that once intubated, a child like Rini would not be able to be extubated without going into cardiac arrest. Her heart was so sick, so tired, that once given the rest of intubation, it would lack the strength to rev up again. This is why both our home hospital and Seattle pushed intubation out as far as they could. It brings its own risks, and they wanted to get as much mileage as they could out of each stage of intervention before graduating to the next.
But even knowing that, perhaps because of knowing that, I didn’t want to accept that it was where she was already. In Seattle, I was alone with her. I was so scared and devastated, and I know I wasn’t thinking straight. God bless him, he looked at me with thoughtfulness, shifted his gaze up and stared into the distance for several seconds, and told me he’d be back.
I can only imagine what conversation took place after he departed. Maybe something along the lines of, “We’ve got a crazy one in room 203.” But a few minutes later he reentered Rini’s room and with great compassion but firmness, he said, “I am your daughter’s physician, and I am asking you to allow me to do what I know needs to be done to save her life.” With that, I nodded and signed the consent forms.
Her team told me that the intubation would begin almost immediately and that they felt she was as critically ill as she could possibly be and still survive the sedation and intubation process.
One of the transplant cardiologists then made a comment that, while cutting and searing, did wonders for how I viewed those caring for my baby girl. She said that they had all spoken about how sorry they were that they had to go this route, from a developmental and attachment standpoint, since Rini would no longer be able to communicate with me. In that moment, the floodgates of appreciation opened within my heart since I knew that they understood.
They recognized the trauma endured by many adopted children… the trauma of abandonment and adoption, how hard-fought attachment can be…and they were sorry to have to interfere with the progress we had made with Rini.
It also hit me like a ton of bricks since in the flurry of that morning, the haze of information and emotional overload, I had forgotten that with intubation would come a cessation of communication with my daughter, and that I might not see her eyes open again unless she was listed and received a heart.
From my journal:
“In an instant I realized that unless the team decided to list her, and unless she becomes the recipient of the gift of a new heart, and unless she survives the transplant surgery, it would be the last time that I ever heard her little voice. I went to the shower room and cried so hard, and then a peace came over me. And at that moment, I turned on my phone for the day and the ping ping ping of waiting texts filled the room. My cousin had sent me her daily scripture four hours earlier:
Right before the intubation began I took this video. I wanted Eric to be able to see his beautiful baby girl’s eyes in case it would be the last time, and I wanted to capture her voice.
This video is still so painful for me to watch, especially the way she stared into my eyes. Right there is a moment between a mother and her desperately sick child. I see fear in her eyes, but I also see determination and love.
The intubation procedure itself went beautifully, but about twenty minutes later, she went into some kind of respiratory failure (I can’t remember the name of it) and they could no longer feel any peripheral pulses. The doctors came in, and she recovered from that episode. They said later that it gave them a good window into how she might respond to interventions in the future, so they were glad to have that insight into her. Their attention then turned into placing an arterial line.
Meanwhile, Rini began a fever that they felt was most likely heart failure versus infection related. But to be on the safe side, they ran cultures on her lines and lung secretions.
That evening, they lifted her sedation to see how she would react. She opened her beautiful eyes and looked right at me and then reached up to me with both hands. I will never forget that moment. Unfortunately, she began thrashing and trying to pull at her breathing tube so she was placed on paralytic drugs and has arms restraints. She was then deeply sedated, which is where she would remain.
My best friend, hearing the pain and strain in my voice, arranged to take our other children in order to allow Eric to drive the four hours to Seattle in order to be with me. I expected him in time for the transplant committee’s decision.
Around 6:30pm, I was notified that I had a surprise visitor. It was a Facebook friend who I had never met in person.
From my journal:
“I went to the waiting area outside of the unit and was so pleased to meet a friend I met on the internet whose child receives care here. As we were talking, I saw one of the transplant cardiologists walking swiftly down the hall. At first, it didn’t occur to me that she had just been in with the transplant committee. My sense of time was distorted by the multiple emotional upheavals of the day. She was smiling, but she’s always smiling and is very hard to read.
She saw me and, still smiling, waved me over. She kept right on walking with me right behind her, let us into the CICU, and walked quickly down the long hallway. I was thinking, “Please stop! Don’t keep walking! Don’t take me to the Quiet Room at the end of the hall!”
Right after she reached Rini’s room, she stopped and turned to me and said, “We have decided that she can be listed.” After everything leading up to that moment, I felt nothing. I was in such shock. All I could squeak out was, “Oh! Thank you!””
It was incredibly surreal. She went on to say that she was pleased to report that Rini was the only child in her weight class and blood type listed at the center. That was important, since chances were good that if Rini received a heart, it would come from Region 6 and Seattle Children’s is the only transplant center in the entire region, which consists of Oregon, Washington, Alaska, Idaho, and Montana. Rini would be listed at Status 1A, the most critical status, and that we should expect a wait of several months, with about three months being average, although they have had some children wait for as little as a few days and others for more than six months.
Eric arrived, and we were both elated! But that feeling would be fleeting.
A new definition of “waiting” had entered into the vocabulary of our lives.
I’m just grateful I’ve followed your family’s story and know your precious Rini is thriving now because this post was the hardest to see.
Thank you for sharing what must be searing to recollect.
Continued blessings to you all,
Brett Butler
Brett, thank you so much for reading and for letting Rini into your heart!
Just when I think this story can’t get any more difficult to read and process, it does. I can’t fathom how you survived those days. Every post makes me want to reach through the screen and hug you.