A Glimmer of Light at the End of the Tunnel

"Hope springs eternal in the human breast..."
                          
             Alexander Pope (1688-1744         

Being back in New York State was a comfortable feeling.  After so many years away from our families, we were within a day's drive of them.  We were able to drive down to Cherry Valley for Suzanne's parent's famous clam bakes and hayrides as well as going further into the NYC area to attend many of my family's events.  When we looked back on previous years, we realized we had missed the weddings of both of Suzanne's brothers as well as her uncle.

Spring in Rochester

We owned our first house and a car, I was gainfully employed and, although life seemed very complete, at the risk of sounding greedy, the glass was half full.  Working with babies and children all day, I really wanted to start a family and I know Suzanne felt the same way.  We felt disappointed by the Jewish Family Service in Akron, reducing all the requests and tasks that were asked of us to..."see ya" when we left Ohio.

We did some research and found that our new county would assist us by providing an adoption counselor.  We attended some sessions on international adoption, listening to parents who had undergone the process successfully.  We decided to go for it and, in 1978, were assigned a wonderful caseworker, Marty Cardona, who would go on to be a very beloved school principal in Fairport, NY.  She was well-informed, patient, and caring and headed us toward adopting a child from Korea as she, herself had done, through Dillon International.

Flag of South Korea

We learned about the community of Korean adoptees in Rochester, their celebrations (Agapah Day), and their culture.  We spent a good part of a year filling out forms, submitting tax returns to prove we could support a child, personal questions and, getting references from friends and family and, essentially proving that we could be good parents.  Most of the children were in orphanages in Seoul, many abandoned by single mothers, as having a child out of wedlock was a social taboo.  It was a rigorous process, far more than I envisioned what it would take to have a biologic child.

During that summer, we learned that there was an opportunity for us to adopt, not one, but two infants...twin girls: Sea Youn Lee and Sea Min Lee.  Lee was the biologic father's name.  We received photos of them, their names, and descriptions of their behaviors.  Wow! Two at one time!  We agreed after I had reviewed their health records and we were satisfied with the way things were proceeding.  The papers stated Sea Youn was progressing, but a bit slowly.  My optimism might have clouded my judgement.

That summer seemed to crawl by and we awaited that phone call announcing the arrival of our twin girls.  We did, however, receive a phone call that dampened our spirits and hopes.  For unexplained reasons, one of the twins, Sea Min, had unfortunately died suddenly in respiratory distress. The call was not only to tell us of this bad news but to inquire if we were still willing to adopt the surviving infant.  Without a second thought, we agreed readily, and despite our sadness and dismay, looking at the photos of these two little Korean infants, we persisted in our hopes.  How could we have done otherwise?

We passed the time preparing a nursery in our second bedroom.  Poor Rex didn't know what was going on, his being an "only child" for so long.  German Shepherds, I believe, have great emotional intelligence and Rex, being no exception, realized something was going to change for the better.  When, indeed, the call did come that our baby would, in fact, be arriving on Sept. 28, 1978 at Kennedy Airport on a Northwest Airlines 747, in the care of someone from Dillon, things kicked into high gear.  We decided on the American name we would call her: Emily Lee, which included part of her Korean name so she would not forget her heritage.  Her Korean name meant "nice world".  We had previously named her deceased sister "Molly".
We would drive down to NYC to meet her at the plane.

We were on cloud nine and could think of little else.  Our friends were all delighted and gave us a wonderful baby shower a few weeks before her arrival.  We received all sorts of wonderful gifts including strollers, blankets, diaper service and some very personal items like this embroidered cross-stitch in a frame.

The big day came and we grasped her in our arms as she was carried off the plane by her chaperone. We fell in love instantly and headed back to Rochester to her new home and Rex.  The first few days, I saw things about her that I knew were not quite right: Her lack of tone, facial expression, head size and motor development but I really didn't want to admit these to myself.  Suddenly becoming a parent out-weighed any concern I might have had for being the parent of a child with disabilities, one for whom we had waited so long.  Rex, forever the shepherd, stood guard over her as she slept peacefully in the room next to our bedroom.

After several weeks of bliss, she began to develop cold symptoms and fever and her pediatrician, my partner, Jim Sayre, recognized she was beginning to show signs of heart failure with poor feeding and rapid respirations.  We worked closely with a wonderful Pediatric Cardiologist at Strong, Chloe Alexson.  Both Chloe and Jim were quite straightforward with us and, eventually, hospitalized Emily.  Tests showed that she had a congenital cytomegalovirus that had infected the lining of her heart, probably the same thing her twin died from.  The next step was cardiac surgery, to address the pericarditis and several days later, she was operated on.  We had been told she would remain intubated for some time after the procedure.  Unfortunately, waiting in the OR waiting room, we were told that she was extubated soon after surgery and suffered hypoxia and seizures in the recovery room.

Imagine our anger and sadness at this point as she was transferred to the Pediatric ICU where she was cared for by some of the same residents who had rounded with me weeks before.  Being a pediatrician, I knew more than most parents about what had just happened but I kept it inside me.  I was mad at the adoption agency for not having done more evaluations and I was angry at the anesthesiologist (who we never met) for rushing her extubation.

She stabilized and was transferred to the pediatric floor where she remained for several weeks.  Suzanne and I literally took turns keeping a vigil over her, eating lots of pizza from "Little Venice" pizzeria, and pretty much keeping to ourselves.  I continued to work with difficulty.  The one saving grace was the wonderful pediatric social worker who was assigned to us, Nancy Rice, and the very caring nurse who was there every day for us and Emily, Sue Bezek.  Sue has since gone on to become the well-earned post of Director of Pediatric Nursing at Golisano Children's Hospital.  Nancy has remained our friend for almost 40 years and we have some of her beautiful photos hanging in our home.

One of Nancy's photos taken in Cherry Valley

One night, on Jan.11th, 1979, as I was sitting next to Emily's bedside reading, I heard her stir and went over to pick her up.  She looked at me, sighed, and then, suddenly, was no longer there.  She had left us but, in her own way, said goodbye to me.  I walked out to the nursing station and told them my daughter had died.  Then, I called Suzanne with the sad news.  Having seen other children die, I was now on the unfortunate receiving end of that experience which I will never forget.

It was a difficult time for us.  Suzanne had just lost her mother in October, and her nephew, Luke, also a newborn, had died from a congenital condition down in Virginia.  Where could we turn to for arrangements? Burial was unknown to us.  During Emily's hospitalization, the Jewish chaplain, Rabbi Judah Miller, had been up to visit several times, at first surprised to see an Asian child.  He always seemed to come when Suzanne was standing watch.  He was the Rabbi of the large reform congregation, B'rith Kodesh in Brighton.  We were pretty non-observant and not in his "flock".  Despite that, he embraced us with kindness and patience and arranged a small plot reserved for children from his congregation in the famous Mt. Hope Cemetery where famous Rochesterians like Susan B. Anthony and Frederick Douglas had been buried.  Emily was buried under a beautiful oak tree, just across from Strong Memorial.  In lieu of a funeral, he conducted an intimate memorial service in our living room for some close friends and family.  It was a brutally cold day and Suzanne's dad, Tex, was stuck at home caring for the cows.  Rabbi Miller took note of this and quoted something from the Talmud about how important it is to care for your herd and milking them, before mourning.  His kindness remains with us even though he passed on years ago.

Mt. Hope Cemeetery

If there is any positive aspect of this, it taught me humility as a physician and how to better relate to families where children were critically ill or injured as well as a better understanding of grief.