In the dark, early morning of December 9, 2011, my husband and I were waiting in the Pediatric Intensive Care waiting room at Doernbecher Children’s Hospital in Portland, Oregon. Our 23 month old son, Bryce, adopted five months earlier from China, had been taken to the operating room almost two hours earlier to begin preparations for his open heart surgery. We were waiting to meet the surgeon who had flown in from Toronto, Canada to perform the surgery along with Doernbecher’s own chief pediatric cardiac surgeon. As we thought of what the day would bring for our child, what it could mean for his future, we couldn’t help but reflect upon all that had occurred to bring us to this point. How did we get here? We were the family that, six years prior, had never considered the adoption of a child with medical needs. When presented to us, the idea was overwhelming and terrifying. And yet here we were. And little did we know almost exactly one year later, we would be in the same room waiting as our youngest child, Scarlett, underwent her first open heart surgery.
Our first child from China, MeiLi, joined our family via the standard process in March of 2007. Joining her big sister, Sophia, we had become a family of four and felt so grateful. During the paperwork phase of Mei’s adoption, our wait for her referral, and her first years home, experiences both large and small had slowly and almost imperceptibly shaped who we were becoming as individuals and as a family. Those changes would shape us in unexpected and glorious ways, and lead us on a path to more precious children…two sons and another daughter!
Our new daughter’s transition and attachment difficulties, plus some unforeseen medical issues, made us realize that “healthy” is truly a relative term. As I sat in the cardiologist’s office and watched as MeiLi had an echocardiogram to uncover the source of a murmur discovered at a well child visit, I thought to myself, “If this murmur had been detected in China, she may have been labeled as a special needs child and we would have missed her.” Although her murmur turned out to be functional and innocuous, it opened a floodgate. During that time, we had become friends with the family that adopted a little girl that had taken care of MeiLi in their shared foster home in China. Their daughter, adopted at the age of 8, had been born with single ventricle heart disease. Upon first meeting her, my husband and I were frightened by her condition and in awe that her family sought out such a medically fragile child. But as time passed, we realized what they already knew: the child is not the diagnosis. Who wouldn’t want to call such an amazing child their daughter? As time passed and the blessings of new perspectives opened our eyes and hearts, conditions which had previously seemed so daunting no longer seemed like anything to be overly anxious about when considered within the context of a child’s life. Parenting had given us the outlook that all is relative, and our relationships with families parenting children with significant medical needs changed our perceptions. A diagnosis, or lack thereof, staring at you from the pages of a child’s file does not define the child, and it certainly offers no guarantees. Although the process is different for every family, we made the decision to take a deep breath and do our best to push our fears aside. We decided to stop attempting to control outcomes.
In 2010, we received the referral of our first son, an eleven month old little guy with the chubbiest cheeks! Tristan was born with a large ventricular septal defect (VSD) and moderate atrial septal defect (ASD), quite routine as far as heart defects go, but to us it was a huge jump. We knew he would need surgery upon arrival home, but much to our surprise 24 hours after we submitted our Letter of Intent, we learned that he had undergone successful surgery one month earlier. We were elated that he had received the necessary medical intervention in China, and we relaxed as we waited to travel. However, three months before our anticipated departure date we received an update from his orphanage with a new diagnosis of Pulmonary Hypertension. He was symptomatic when we arrived in China in May of 2010, and although in most cases secondary PH resolves after the correction of the underlying heart defect, in our son’s case it grew worse with each passing month. Dissatisfied with the passive nature of his care under his original cardiologist, we transferred his care and within two weeks of that he underwent a heart catheterization procedure and began treatment. Fortunately, he has responded very well and we are hopeful that he will enjoy good health for many years to come.
As we emerged from the emotional rattle of his diagnosis, we recognized that we were living what we had initially feared. We came to the realization, though, that the fear had been replaced by strength and resolve. We were so grateful to have him in our lives, and there was nothing we wouldn’t do for him. Caring for him, even through the anxiety, tears, and financial hurdles, was a privilege. “There is nothing to fear but fear itself” became a family mantra. We were no longer scared. We were on the other side, and it was liberating and joyful!
Nine months after bringing Tristan home, we had settled into our new normal and we applied to our agency again. Our specific request to our matching team and social worker was, “Please find us a child with complex heart disease, a child who has been waiting for a family.” Within a short amount of time, we were matched with an adorable 13 month old little boy who had been on the CCCWA’s shared list for six months. His CHD was considerably more complex than Tristan’s: double outlet right ventricle, transposition of the great arteries, ASD, mild pulmonary stenosis, and an underdeveloped left ventricle. His echocardiograms also suggested PH, and given the amount of time that had passed, the medical professionals expected his PH to be significant by the time we got him home. They prepared us for the possibility that he would be inoperable. We discussed the potential scenarios with our cardiology team, and while we were bracing ourselves for what might come, we were also eagerly awaiting the blessings that would come.
Bryce was adopted in July of 2011, and his infectious laugh and animated personality instantly brought such happiness to our family! What a precious gift we had been blessed with! His care for his first five months home was intensive, since he had feeding and digestive issues along with his cardiac disease. He was hospitalized upon arrival home because of his significant malnutrition and inability to eat, and began to be fed almost entirely by nasal-gastric tube and later by a gastronomy tube. It was discovered that he could not digest milk-based proteins, and was placed on a hypo-allergenic diet while we worked with both his Gastroenterologist and our hospital’s feeding clinic to help him learn to properly suck, chew, and swallow. Concurrently, he began to undergo the necessary tests to evaluate his cardiac situation. Yes, his care did leave us tired on some days. Yes, there were financial hurdles and moments of great anxiety involving money. And yes, we shed tears when our thoughts took us to the worst case scenario. But yet again, those things paled in comparison to the utter and pure joy of opening the door to his room each morning and seeing his smile and his little legs kicking in happiness as he would shout, “Mama! Daddy!”
On the day of his heart catheterization as we waited for the cardiologists to give us the results, my husband and I discussed the possibility that he would be inoperable and what that would mean for him and for our family. My husband, who had traditionally been the more emotionally guarded of the two of us when it came to our adoptions of medical needs children, gave me such peace when he said, “Even if it doesn’t turn out okay, we will all be alright.”
Our cardiologist entered the room with tears in her eyes, but they were tears of happiness. “Absolutely no PH!” she said. We were stunned into silence. She continued, “We believe as he grew, his pulmonary stenosis grew more severe and it protected his lungs. He should be a good candidate for a repair!” Then she said it. “You guys really took a leap of faith.” That statement, uttered by many and well intended, has always bothered us. For us, the statement insinuates that we adopted with the faith that things would work out to our liking, and that because the outlook looked promising our faith had paid off. But that was not where our faith was. We chose to adopt Bryce with the knowledge that he might not survive, but with the faith that God would be with him, and us, through whatever was to come. We have found that to be our liberation.
All along, we had believed that Bryce would have the Rastelli procedure if he was a candidate for surgery. But our surgeon suggested a newer procedure, the Nikaidoh. Much more technically complex than the Rastelli, and with far fewer surgeons with any experience with it (Dr. Nikaidoh himself has performed 24), it would offer him a near-normal cardiac anatomy and a much better long term prognosis than the Rastelli. Our surgeon told us that either he would see to it that a surgeon experienced with the Nikaidoh was brought to us, or we would be sent to him/her. After seeking out the opinions of Nikaidoh-experienced surgeons across the U.S., and all in agreement that Bryce was a textbook candidate for the procedure, we were greatly blessed to have had one of Canada’s gifted surgeons offer to fly to Oregon to perform the operation. This benefitted not only our son, but his gracious offer would succeed in passing his knowledge on to those who would assist him on the day of surgery.
So there we were on December 9, waiting for our son to emerge from surgery. He had a relatively uncomplicated recovery and has the expectation of a normal lifespan. There will regular check-ups and echocardiograms, and the need for a valve replacement in the future, but as with everything else it has simply become part of the fabric of our family’s life. He is now taking in all of his calories orally, is developmentally on target, and is an amazing son and brother.
I was shocked when, shortly after Bryce’s surgery, my husband declared, “This is great! Let’s adopt another child!” We agreed that we would wait for awhile before beginning the process, and knew we would adopt a child with complex CHD alone or in conjunction with other medical needs. Why not? By this point we had great faith in our ability to navigate the waters and we were grateful to God for leading us on this path which had so richly blessed our family. But although we felt we should wait awhile, God had other plans. His plan was for me to stumble upon a little girl known as “Carrie” on an agency’s waiting child photolisting. I had come across her a couple of months prior to Bryce’s surgery, and something always prompted me to check to see if she was still there. She was. She was said to have “complicated heart disease,” and the fact that she was still waiting month after month clued me in to the fact that her CHD was most likely of a very severe nature. Almost nightly, I would wake and tiptoe downstairs and check the photolisting to see if she was still there. At last, my husband asked me, “What have you not done that you are supposed to do?” He was right. Throughout my life, when I was fighting God’s plan because it did not fit into my own, I would find myself tossing and turning. It would not be until I let go and embraced the unknown would I find peace. So with my husband’s blessing, I requested her file: single ventricle, single atrium, anomalous pulmonary venous drainage, mild pulmonary stenosis, and pulmonary hypertension. She sounded absolutely perfect to us. Another gift. Another blessing.
Five months later, a beautiful (and quite blue) 11.5 pound, 26.5 inch, 26 month old little girl was placed in my arms in Xi’an, China. Her diagnosis after her U.S. echocardiogram, cardiac MRI, and heart catheterization was: hypoplastic left heart syndrome, total anomalous pulmonary venous drainage, double outlet right ventricle, malposition of the great arteries, severe pulmonary stenosis, half a dozen other cardiac anomalies, and no active PH but residual damage from prior high flow. Her oxygen saturation had dropped from the low 60’s at the time of her adoption to the low 20’s on the day of her Bi-Directional Glenn, TAPVR repair, and septectomy on December 13, 2012. We were told that she had been living on borrowed time, and her team was amazed that she had survived for over two years with no medical intervention whatsoever in China. The irony is that her malnutrition probably saved her life, since she had stopped growing at 9 months of age and did not begin again until her adoption and subsequent weight gain which in a cruel twist, is most likely what led to her rapid decline after her adoption.
Scarlett’s transition into our family was seamless in most ways, but heart wrenching in others. From her Giardia and Shigella infections, to her inability to cry, laugh, or move without respiratory distress and complete fatigue, we witnessed her physical pain and it was so difficult to bear. There were constant reminders of the fragile state of her health, and it made the first months emotionally taxing. My husband embraced the uncertainty of her future more easily than I did. I have found that to be my most difficult task. Intellectually I knew what we would face, but grafting the reality of it into our lives after having fallen in love with her so intensely was painful. During our darkest moments, we would remind ourselves that it was God who guided us to our sweet baby girl, and we needed to lean on Him for support. The conclusion that I have come to is that I would much rather live with the entire range of the human experience, the highest highs and the lowest lows and all that exists in between, than to have played it safe and missed the greatest loves of my life.
Our sweet Scarlett spent two weeks in the hospital recovering from her first surgery, and she is now making up for lost time within the love of our family. She is crawling, scooting, beginning to stand, can say several words, and loves us with absolute abandon. I can honestly say that there can never be a day devoid of pure joy with her in our home. How I love how she shrieks with happiness when I scoop her up in my arms, her little legs kicking wildly and her little hands clutching either side of my head as she plants kisses on me! She is God’s perfection packaged as a precious child. My wish is that every family would allow themselves to be so blessed!