The Diagnosis: In Good Hands

Saving Laura’s Life, Part 2

In Good Hands

I instructed Paul to hold Laura as we walked from the parking lot toward the main entrance of Boston Children's Hospital.  My steps were slow and  labored as I strained to put one foot in front of the other.  We stopped in front of the revolving door; one we would come to see as a symbol for an endless cycle of admissions and discharges.  I asked Paul if I could have Laura back again. I wanted to hold her in my arms and feel her innocence.  

Paul motioned me to go through the automatic door instead of the quickly moving revolving doors, so that we wouldn’t stumble.  Once inside the hospital, appearing immediately in the lobby, was a woman holding and waving a sign that said, Fazio.  I could see by the expression on her face that she knew right away, we were the family she was expecting.  

Wasting no time she directed us, “Please come with me. Dr. Long is waiting for you in Cardiology.”

I can't recall exactly the order of what came next, first, or afterwards, but I do believe that when we got out of the elevator, we were greeted by Doctor Long. After he ushered us into the waiting room, we had a brief and rushed meeting with him. 

"We have lots of tests to do and this will take some time, so I would like to get started right away if that is ok with you.  Each test will be explained to you as we go along, and none of them are invasive, so do not worry, “ Dr. Long said. “The tests don't hurt, except for maybe the blood tests,”  he said as if this was great news for us to hear.   Dr. Long continued on with an upbeat tone, “This will be easy for your baby, and you can stay with her the whole time. The first thing I would like to do is the echo. Please follow me.” 

“What’s an echo? “I asked

“Echo is short for an echocardiogram," he said. "It will all be explained to you by the technician. Basically it’s one way to take a close look at your daughter's heart to get a moving picture of it, a type of an ultrasound."   

"I never had an ultrasound when I was pregnant," I declared to him, while thinking out loud.  “They don’t do them unless you are 30 years old.  I was 28 for most of my pregnancy, turning 29 just a week before Laura was born.” I said. 

   Half listening he nodded as if to acknowledge me.  Dr. Long was smiling warmly and reassuring us with a calm and caring voice, " I told Dr. Maltz that I would take good care of you. I will see you later, at the end of the day when all the tests are complete." 

  I wondered why he didn't ask us any questions about our baby's symptoms or what we had noticed as parents in the past four months. Thinking that he must have gotten the information he needed from Dr. Maltz, I concluded that it was all he needed to know at this point. I did feel a sense of security to be in this hospital even though I was afraid of what would be revealed. When the nurse arrived, I reluctantly handed Laura over to the echo nurse.  Paul turned toward me in a reassuring way. 

“We are at Boston Children's Hospital,” he said. “We’re in good hands.”

The Diagnosis

A medical requisition was placed in our hands by the secretary as she pointed toward the doorway, which elevator we should take to the blood lab. I noticed that Dr. Lang was across the room motioning us to stay in the waiting room and sit back down again. What now? I thought.  Paul and I looked on as the doctor was speaking to a nurse and shaking his head from side to side, while she was nodding forward. It looked as thought he was either admonishing her or just emphasizing something. It seemed serious.  When she turned to walk and approach us, my stomach sank.

  "Come with me,” she said with a smile, while escorting us into yet another small room, this time with the words, Treatment Room, written on a sign at the top of the door.  

"I'll do Laura's blood work here, and save you the trip down to the lab,” she said. “There is usually a wait there,  and Dr. Lang asked that I do it myself. It will be quicker and less stressful for you. I know you are having a long day,” she acknowledged kindly.  
We began to wonder if  urgency was the real reason, though we were glad to be spared the ordeal of searching for the blood lab, which we learned was called Phlebotomy.

  We were in a foreign country, a subculture with its own native language. Laura was subjected to an array of cardiac tests that day; EKG,  echocardiogram, blood work, x-rays, and  oxygen saturation readings.  It was unknown to us then, that the same diagnostic tests performed on her initiation to Boston Children’s Hospital that day, would become repeated throughout Laura’s life. Paul and I would become fluent in the medical terminology, and the cardiac test routines that would be repeated on all of Laura’s future visits to this same outpatient cardiac clinic, Fagen 9.  

“We'll do the x-ray up here today too," the nurse said as if we were being granted a special treat.  A woman wearing a lead vest was wheeling in a portable x-ray machine.  

A portable x-ray machine? I think I may have stated this out loud with surprise. I wondered if it was customary to have x-rays in a doctor's office.  Actually, this was not routine at all.  Later we would learn the urgency of the situation; that after Dr. Lang looked at what the results of the first two tests revealed, it was indicated to the medical staff that Laura should be safely cocooned in this private office area for the remaining tests, rather than be traipsed around the hospital. Nor was there the luxury of time for the doctors to wait more than a few minutes for each of the test results. Unbeknownst to us, plans were already underway for Laura's admission into the hospital well before we were told of her diagnosis. 

Sometimes in life, especially in the medical world, waiting is just not an option. Consent to proceed with medical treatment was the next thing on the minds of  a group of doctors, which we learned later that day was called the cardiac team.  A group of attending physicians, cardiologists, cardiac fellows and residents, nurse practitioners, and medical interns had already been meeting, discussing and concurring on what next steps would be taken while Paul and I handed Laura over for a final test, unsuspecting any graveness.  

Everyone had been so caring and almost too nice. The calm before the storm, we wondered as we commented to one another, that we were being given what seemed to be the royal treatment.  It began to feel like this could be more than  just a heart murmur.

Laura had slept through some of the tests, cried through others, but mainly I noticed that she seemed even more lethargic than on previous days. Not realizing that it was her dire state that brought about a state of lethargy, we attributed her fatigue to the same exhaustion we were feeling from this whole ordeal. I nursed Laura as we waited for results in Dr. Lang's examining room, the same one we sat in on our arrival. By this point, it was getting dark. The tests had taken many hours, and Paul and I were tired, hungry and weary from the anticipation of what they would reveal.

“The tests must be complete if they are bringing us back here,”,Paul exclaimed. 

When the door opened we expected the middle aged, tall and wiry, blond and frizzy haired, that we said, looks like a mad scientist, Dr. Lang, to be the one to walk in. Instead, a shorter and stockier man with an accent came into the room, who had a very different persona than the energetic and confident doctor we were expecting.  He introduced himself with a quiet and calm voice.

“Hello, I am Dr. Schoeller,” he said. “I am a cardiac fellow on Dr. Lang's team. Dr. Lang asked me to apologize to you for not being here himself. He has an emergency to attend to,” he informed us, which reminded us that we were in a place where emergent things happened.   Dr. Schoeller settled into a seat directly across from us as we repositioned ourselves in our seats. I  will never forget what the doctor looked like, or his words and the manner in which he conveyed the news to us.  Dr. Schoeller was dressed in a plaid dress shirt and beige pants instead of a white medical jacket that Dr. Lang was wearing. He too had a stethoscope around his neck.

  “Can I listen to your baby’s heart?” he asked.

 I nodded yes, as he moved his rolling chair closer to me, while I sat there holding Laura in my arms. He gently leaned forward as I opened the baby blanket to reveal Laura's chest area. 

"You can keep her shirt on he said, I don't want to put the stethoscope directly on her skin, it’s a bit cool,” he said as he warmed it up in his hands, then gently placed it over her heart to take a listen.  Dr. Schoeller leaned back in his chair, I broke the silence, and the tension with a question about where he was from.

 " I am here from Russia, on a fellowship,”  he answered, “ I’ve been at Children’s Hospital  for two years. My term will end in a few weeks.” 

I had already begun to attach to Dr. Schoeller as a person that you could trust and was saddened to hear he would be leaving so soon. I am not sure if it was his soft voice or if it was the kind way he approached Laura that won me over in a matter of minutes. 

Dr. Schoeller fidgeted a bit in his chair and crossed his arms over his somewhat burly chest, then leaned back and took a deep breath. He began to speak, slowly and deliberately serving up the news in small bites.

" I am not going to say that there is no problem,” he began, then paused. " In fact there is a problem." 

Paul and I strained forward to hear his soft spoken and well paced words.  

“Your daughter does have a problem, and it is not a small problem. In fact it is quite a big one,” He said

We were both staring straight at him, hanging each word.

“Your daughter is missing a chamber of her heart. She has what we call, single ventricle complex congenital heart disease.”

He turned to pick up a diagram of a healthy heart. He crossed out the right ventricle and then switched around some of the main arteries on the page. He held it up to show us. 

Dr. Shoeller continued, ”Laura is missing the right ventricle, but she has the left ventricle. Her pulmonary artery and aorta are in switched positions, which we call, transposition of the great arteries. We will need to admit your baby into the hospital right away, and then begin prepping her for heart surgery, which I suspect will be in the next few days.”

Shocked, I looked down onto my lap, to kiss Laura’s head, the only exposed part of her that was unwrapped in the blanket.  How could this be possible, I thought?  It couldn’t be real. The air around me seemed to change temperature and density, and I felt I would either be crushed or carried away by it. I leaned back into my chair to stabilize myself and held onto Laura as tightly as I could without hurting our baby, who had suddenly become a far more highly fragile being. Paul was silent, looked over to me, then back at the doctor. 

Is she going to be ok? What next? Oh my God! I really can't recall what we may have said at that point, or if we said anything at all. The only thing I remember is that Dr. Schoeller said we needed to admit her immediately.

        “ Laura’s room is ready and they are waiting for you. I will escort you there, to Division 35,  Inpatient Cardiology.”