A family explains how embracing a child with a heart condition was an act of love, not a leap of faith.
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 a technically complex 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 cardiac surgeon. The procedure had not been performed in our state before, and only a handful of surgeons worldwide had experience with it, but it would offer our son the best chance for a hopeful prognosis. As we thought of what the day would bring, what it could mean for our son’s 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. The idea, when it was presented to us, was overwhelming and terrifying. And yet here we were.
Our first child from China, MeiLi, joined our family via the standard process in March of 2007. She joined big sister, Sophia. During the paperwork phase of Mei’s adoption, our wait for her referral, and her first years home, experiences had slowly and almost imperceptibly shaped who we were becoming as individuals and a family. Those changes would shape us in unexpected and glorious ways, and lead us on a path to more precious children — two sons!
When we began the process in 2005 to adopt MeiLi, the majority of referrals were coming through the standard process. We knew very little about adoption availability for children with medical needs. As our wait for referral lengthened, we began to meet other adoptive families who had adopted children labeled “special needs.” Fifteen months after our dossier was logged-in, we submitted a medical forms checklist to Holt in order to pursue a special needs adoption. Our openness to different medical needs was limited, to say the least, and we only indicated openness to one minor need. The special needs program was very different back then. We were not matched in the three months between submitting our checklist and receiving our standard process match. The seed had been planted, however, and we felt drawn towards adopting a child with a medical need one day.
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. After Mei had been home for two years, my husband and I started discussing another adoption. We knew that we would choose to adopt via the special needs route, no matter what the timeline for the standard process looked like. As we reevaluated our openness to different needs, conditions that had previously seemed so daunting no longer seemed like anything to be overly anxious about. Parenting had given us an “all is relative” mentality. 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 11-month-old 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 arriving home, but, much to our surprise, 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, several weeks before our anticipated departure date we received an update from his orphanage indicating that he may have developed Pulmonary Hypertension (PH). By the time we arrived in China, he was symptomatic, 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. Immediately after transferring his care to the cardiology team at Doernbecher, he underwent a heart catheterization procedure and began treatment. Fortunately, he responded very well and we went from anticipating his slow decline into heart failure and a life expectancy of perhaps 10 to 15 years, to anticipating a near-normal life expectancy. As of this writing, his prognosis is excellent.
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.
As we settled into our new normal, we began to hear about the new program which would allow the reuse of a dossier for the adoption of a “special focus” child. We inquired with Holt, and nine months after bringing Tristan home, we applied again. Our specific request to Beth Smith and our Holt social worker was, ‘Please find us a child with complex heart disease, a child who has been waiting for a family.’ Within a very short amount of time, we were matched with an adorable 13-month-old little boy who had been on the shared list since he was 7 months old. His CHD was considerably more complex than Tristan’s. His echocardiograms also suggested PH, and given the amount of time that had passed, the medical professionals expected his PH to be significant. 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, which afforded us ample opportunities to facilitate bonding. 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 Doernbecher’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 costs 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, 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.
So there we were on December 9, waiting for our son to emerge from surgery. He sailed through and has made a complete recovery, with a new near-normal cardiac anatomy and the expectation of a normal lifespan. There will regular check-ups and echocardiograms, plus one or two additional surgeries in the future. He is now taking in the majority of his calories orally, is developmentally on target, and is an amazing son and brother.
We are now waiting to travel to adopt a little girl who will become our fifth child, a precious child with heterotaxy and multiple, complicated heart defects. Her needs will be the most challenging our family has faced. But we are so thrilled to be the ones to love her and assist her through whatever comes our way.
I have no doubt that many families who have adopted, and especially those who have adopted children with special needs, have heard the following statement from people, or some variation of it: “You are so wonderful to have adopted!” It’s another one of our pet-peeve comments, although kindly meant by the deliverer. No, we are not wonderful or special. We are not saints. We are actually quite selfish. You see, we’ve just discovered a way to bring some of God’s hidden treasures into our lives.
Andrea | Adoptive Mom