Parent Testimonial Speech

We were asked to give a Parent Testimonial presentation this week at Georgetown, to help the staff understand how they might better attend to the needs of their patients:

We were told she was dying. The doctor empathetically laid her hand on my knee as we sat in a conference room at Sinai Hospital in Baltimore. Afterward, we walked back to the room our 3-month old daughter had been admitted to less than 24 hours before. My knees buckled, and I went down... hard.

Kai had been jaundice when she was born, but we were told it was normal, to supplement with formula and no one thought much more of it.

When she was 2-months old, we visited our family in Ohio. It was during that trip that Kai began to turn very yellow. Her pediatrician saw her for a routine check and sent us off for blood work. She called the next day and gave us the number for Dr. Kalpana Murthy’s office at Sinai. When the earliest appointment they could offer was a month away, the pediatrician called and got us in the next day. That was really the first time it occurred to my husband, Ryan, and me that something might be really wrong.

During the appointment, I changed Kai’s diaper while Dr. Murthy stood in the room. For the first time, her stool was thick and black. “How long has it been like that,” she was quick to ask.

“This is the first time...” I trailed off.

We were admitted immediately. A long night of poking and crying ensued. And, then, the talk: “She is in end-stage liver failure. We’re not sure why. There’s nothing we can do for her, here. We have to send her to another hospital. She needs a plasma infusion to help her clot - she’s bleeding internally. After that, we will medivac her to Georgetown in DC.”

It was raining heavily. Ryan and I went down to the chapel. Neither one of us had been to church in a very long time. Yet, we sat there, holding hands, and we prayed. Bargaining with anyone who would listen up there. Please, don’t take her. I’ll do anything.

The rain was too heavy for the helicopter to take off safely. She would be transported via ambulance to another hospital. I rode with her while Ryan ran home to pack a bag.

We arrived at Georgetown right before a shift change. C5 was under construction, nurses were understaffed and we weren’t the only emergency that day. To my untrained eye, it seemed like pandemonium. At this point, my memory becomes a bit fuzzy. Bits and pieces drift through my mind as though it were all a dream, but never the whole picture.

I remember feeling scared and overwhelmed. The hospital looked like it was falling apart. The staff were brief and hurried. We were windswept into the storm, but it had followed us inside.

As the night shift came in and darkness fell, it became quiet. I realized I hadn’t eaten all day. I was suddenly starving.

Our nurse, Hilary, got me a sandwich. She was calm and kind. Her presence was soothing.

A battery of tests and examinations followed in the week after that. We met Dr. Kaufman, who we liked immediately. He communicated at the speed of light, every theory and possibility and outcome. While some might have felt overwhelmed by all this rapid-fire information, we actually appreciated it. An investigation was taking place. A plan was forming. All was not lost - something could be done!

A few days into our stay, a child in the room next to us passed away. We heard the family’s cries of grief. It was heart wrenching.  We felt horrible for that family... but one look at my husband confirmed he was wondering the same thing: Could that be us?

One of the final tests, a liver biopsy, was scheduled. We were told it would take 3 days for the results to come back. You can imagine our confusion when we were called into the operating room before Kai woke and asked to sit down. They didn’t need 3 days to know that she needed a liver transplant. Soon.

I remember, very clearly, Dr. Rekhtman kneeling down in front of us as she held our hands and promised my husband he would walk our daughter down the isle, someday.

With that, we were sent home with an NG tube, a folder of instructions and more medicines than I care to remember. A hospice nurse met us at our house that day. The race against time ensued as my husband began going through the extensive process to be tested as Kai’s living donor.

Just over 2 weeks later, Kai was readmitted. She had become very ill. Ryan was rushed through the approval process and their surgery was set less than a week after that. Dr. Matsumoto explained that she was running out of time and no other organs had become available.

The process of diagnoses to transplant had taken just over 4 weeks. It seemed like eons. 

The day of the surgery arrived: April 9th, 2008. I remember very little about this day as I sat in the OR waiting room, receiving updates from a very sweet young woman in brightly colored scrubs named Emily. My parents, my husband’s aunt and one of my best friends sat with me.

Ryan was out of surgery first. I navigated the winding halls and various elevators to ICU to visit him. He was so swollen, and as white as a sheet. The nurse explained he had lost a lot of blood. He opened his eyes for a moment when he heard my voice. I took his hand and he whispered, horsely over the tubes in his throat, “How is she?”

While Kai was being moved from the OR to PICU, Dr. Fishbein met with me in a conference room. Those damn conference rooms. The surgery had gone well, the liver was working! However, her vascular structure around the liver was not typical and her portal vein and Ryan’s didn’t match up very well. She might need another surgery. Worst-case scenario, she would need another transplant.

I went to PICU, where Kai had finally been cleaned up and arranged on a bed. She was a tiny, pale, sleeping bundle of bandages laying in a web of tubes and wires. A stark contrast to the always-smiling, yellow-skinned baby that I kissed on the forehead that morning.

That night, alarms buzzed and beeped almost constantly. Blood oozed into her abdominal drain quickly and had to be emptied frequently while more blood was pumped back into her through one of her many IV’s. People hurried in and out with intense looks on their faces. I asked our nurse if this was normal. “It can be,” she replied, but the tone of her voice and the look on her face told me something was wrong.

Early the next morning, Kai went back into surgery. She had a thrombus in her portal vein and the liver was not getting enough blood-flow. Dr. Fishbein promised me that he could fix it, and I believed him.

I know there is a running joke that surgeons don’t need any boosts to their confidence, but I’d like to take a moment to say that Dr. Fishbein is our hero. As is Dr. Johnson, Dr. Matsumoto, Dr.’s Kaufman, Little and Rekhtman and the entire nursing (we LOVE our nurses!) and support staff. There are far too many people to name, but that little girl sitting right over there? She’s here today thanks to all of them.

In the months and years that have followed, we have had our bumps and rough spots. We have become intimately familiar with medical terminology and procedures. And, while we understand it, it doesn’t make it any easier to watch our daughter go through it.

She and I have been diagnosed with severe Post Traumatic Stress Disorder. Not uncommon for families with intense, prolonged, medical trauma surrounding a child’s terminal or life-threatening illness. I’m sure Ryan suffers from it, as well.

While we are very satisfied with Georgetown and have very few, if any, complaints, we do have some suggestions for areas of improvement:

Doctors, while focused very appropriately on mitigating risk and increasing chances of survival, often neglect to consider the emotional fallout. For example, while the first inclination to encourage a child to gain weight is to insert another tube somewhere, other options such as occupational therapy to address oral aversion or other such obstacles can easily be overlooked. Weary and confused parents, who just received a crash course in transplant and hepato-biliary science, often don’t know what questions to ask to achieve the best outcomes - while another tube doesn’t seem like a setback for a doctor, it’s a frustration for a parent that just wants to be able to provide as “normal” a life as possible for their child.

I’m not certain how this issue would best be solved - testimonies such as this, I’m sure, do help. However, it seems as though some intermediary person would be beneficial in helping parents ask the right questions, and helping doctors to offer, perhaps less common, but less invasive options.

Another helpful tool in the world of pediatric transplant, might be a newsletter. A bit of current transplant news, maybe a heads up that the transplant phlebotomy lab has moved (again), along with helpful reminders, such as: your child needs to take antibiotics before going to the dentist.

Kai was only 4 months when she had her transplant. Dental appointments were the farthest thing from our minds when we read through the hefty transplant handbook that we were given. We were in survival mode and only focused on what we needed to do right then. Add to that the state of complete overwhelm we were in when we attempted to absorb that information and, a year later at her first dental appointment, we had completely forgotten and would not have known, but for the dentist asking if she’d received her antibiotic prior to coming in.

On that note, a PDF file, able to be downloaded from the Georgetown website, of the most recent copy of the transplant handbook might also be helpful. Better yet, a parent portal where we can access the handbook, lab results, helpful tips, and news!

To recap, we could really use: Help asking the right questions during transplant, some form of communication to convey current transplant news, tips and reminders to help parents stay connected, access to a current copy of the transplant handbook, and more consideration for the emotional effects of transplant.

Even without these additions, our overall experience here at Georgetown has been nothing but positive. Everyone here is wonderful, from our friend Esayas, who attends the parking garage, to the phlebotomy lab staff, to the child-life team (who we absolutely could not live without!), to the amazing doctors, nurses and technicians.

Looking at Kai today, 6 years post transplant, how could we not be thrilled? She’s here, because of all of you. To say we are grateful would be an understatement.