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An Amazing Journey Through A Dark Valley

01 February 2015 Written by  By Linda Haycox
Published in February 2015 Articles

In 2004, my husband, Steve and I, adopted a seven-month-old child from Kazakhstan.

Through a picture of her at three months, I had fallen helplessly in love with the infant before I ever held her tiny body in my arms. Big brown eyes gazed into my own; I felt she was calling to me. We flew to Kazakhstan where I could finally hold her to myself and kiss the top of her little head. The infant had obviously been well cared for by the loving staff in the “Baby House.” Her name is Gianna, but from the beginning, everyone called her “Gigi.”

When Gigi was one year old, she began waking up in the morning with eyes that were red and inflamed — sometimes to the point of being swollen shut. Her stomach was distended, as well. I took her to her pediatrician, who diagnosed the eye condition as allergies and her distended stomach as baby fat. Two years later, I took her for a routine check-up. I told the doctor about her stomach, which by then was hard as a rock. The attending physician further discovered high levels of protein in her urine and referred us to the Children’s Hospital in Oakland. They ran a number of tests that, for example, ruled out cystic fibrosis, thank God, but a kidney specialist diagnosed her as having “nephrotic syndrome,” which allows protein to pass into the urine denying the body sufficient protein to regulate fluid levels.

The word “syndrome” in the title means that the condition can take various forms, so the doctor prescribed treatment for the most minor version, which consisted of high doses of Prednisone steroid. As famously demonstrated by professional athletes, weight gain is one of steroid’s side effects, and little Gigi’s back and stomach subsequently expanded to the point that she became unable to walk. I was naturally alarmed and tried to communicate my concern, but the nurses — apparently trying to insulate the doctor from what they assumed to be a hysterical parent — kept putting me off and reassuring me that Gigi’s weight gain was normal. I knew that anyone looking at my poor daughter would realize that there was nothing normal about her appearance, but I could not get anybody at the hospital to agree to look at her.

Things finally came to a head when I noticed that her breathing had become labored. I realized that my daughter’s condition had become critical, so I called Steve and told him that I was taking her to the ER. Steve called the hospital. Gigi’s pediatrician wasn’t there, but they said to take her to the emergency room in Oakland’s Children Hospital where they had nephrologists on staff. When we brought her in, the doctor took one look at her and said in alarm, “How come you didn’t bring her in sooner?” At that point, of course, I wanted to smash something but restrained myself and told him that I had called repeatedly but the nurse kept reassuring me that Gigi’s weight gain was normal. They took Gigi’s vitals and discovered that both her heart rate and blood pressure were severely elevated.

Fortunately, Gigi was finally under the care of the right person — Dr. Rose Ellen Morrell, who was the department head of Nephrology at Oakland Children’s and a warm and compassionate human being. Her doctor came that night and was appropriately shocked by Gigi’s appearance and condition. I began bawling and asking why she had never returned my phone calls. Of course, she had no possible response that would have made sense to either of us, so she simply said, “Let’s take care of your daughter first. We’ll talk about this later.”

I spent three days in the same clothes until neighbors brought me a change. Three months would pass before I would see my house again. My wonderful mom, Michele, flew in from New York and was a huge comfort. She stayed fulltime in the hospital with us. We spent our nights sprawled out on waiting room chairs and couches, until they finally gave us a cot in a utility closet. Mom had grown up with four sisters so she showed me how the two of us could sleep head-to-foot. The ICU was an open room with curtains separating beds. Code Blues were happening in full view; children were passing away beside us surrounded by grieving parents. I would read to Gigi. Sometimes I would put headphones on her and play children’s songs and nursery rhymes.

We spent a month at Children’s followed by two months at UCSF. UCSF turned out to be a family friendlier environment than Oakland Children’s. The hospital pediatric ICU had actual rooms. There were large windows so that the patients could be monitored but there was some privacy.

It was a great moment when Gigi finally opened her eyes for the first time in over a month. Her first word was a squeaky “Mom.” Her muscles were in a state of atrophy and she still couldn’t move because of the dialysis catheter in her leg, but she was finally able to wake up a little.

Steve and I continued to spend the entire time with her, sleeping at night in whatever conference room or waiting room was available. The doctors said that she could go home when she was able to walk 50 feet. It was a great day when that happened. She actually only made it 40 feet, but they declared that to be good enough. Our neighbors met us at the entrance to our Shadow Lakes neighborhood with signs and a parade of cars. Steve had gone home twice during those three months, but I had never left the hospital. Neighbors and friends were caring for our animals and bringing us changes of clothes. One of my neighbors had the house cleaned for our arrival.

Even after she finally left the hospital, we were giving Gigi 20 meds, twice a day. They had to be crushed, liquefied, and inserted into her gastric-tube. It was hard, but we were home. It was a good hard.

When she was finally strong enough to have the biopsy they diagnosed Gigi’s condition as genetic Focal Segmental Glomerulosclerosis (FSGS), which they said was scarring of the filtering units in the kidneys. The condition is incurable, which meant that Gigi would eventually go into renal failure or, perhaps, into remission. Trying to get a child into remission was a terrible challenge and not always successful. Gigi would never recover normal health until she got a new kidney.

A UCSF nurse, named Julie Withrington, was British with a no-nonsense attitude that turned me off, when I first met her. However, it’s difficult for me to remain a stranger very long with anybody. I’m chatty by nature, and when I’m under pressure I tend to use humor as a coping mechanism. While we were in the darkest part of the experience, Julie worked the graveyard shift on Gigi’s 24-hour dialysis machine so she and I began to grow close. I discovered Julie had a daughter a year younger than my own. Every day at 6:00 a.m., Steve would bring me my custom ordered Starbucks coffee.

One morning he came in carrying the drink and Julie said, “Is that a Grande Decaf Nonfat Sugar Free Cinnamon Dolce Latte?” I said, “Yes.” We were astonished to discover we both preferred the same drink. The next morning Steve came in with two of them. After that he began taking orders for other members of the medical staff. Julie was a nursing instructor in the hospital on her days off and during breaks she would come around to check on us.

Julie and I maintained contact after we took Gigi home. We would talk on the phone and meet for coffee. She would come to visit with her daughter, and our two girls hit it off right from the start. One day Julie and I met for dinner at a restaurant in the City, and I met her husband, Rob. Our two families grew close; we even took a vacation together to Puerto Vallarta. Gigi did fine during our little holiday. “Kids are resilient” is more than a slogan. For another thing, it helped that we had brought Gigi’s personal nurse with us.

The need for a kidney transplant was the elephant in every room, during those days. A neighbor, Christine Rook, had been approved as Gigi’s kidney donor. On September 2013, Gigi went into renal failure and the time for a transplant had arrived. Unfortunately, it was no longer safe for Christine to donate a kidney, and felt bad that she wasn’t able to make the sacrifice. Gigi was on dialysis three times a week, so we seemed to spend most of our time driving in traffic, eating Taco Bell, and living out of our cars. After three months of that, Julie’s husband, Rob, said that he was the donor. “I’ve been asking God. ‘Why am I here?’” he said. “Now I know; I’m here for Gigi.” Rob was certain that he would be the donor and when he was tested he wasn’t the least bit surprised to learn that he qualified as a good match.

On the day of the procedure Rob admitted to a nurse that he was very nervous, but then he added, “I’m ‘normal’ nervous. Otherwise there would be something wrong with me.” Rob was on the eleventh floor making the donation; we were on the seventh floor waiting to receive it. Nobody at the hospital had known the role that Julie played in all of this; we respected her wishes to keep her professional and personal life separate. A few of the medical staff saw her on both floors and figured out what was happening, but they respected her enough not to press her about it.

Fortunately, the transplant was a success. Since the operation, Gigi’s lab reports have been a roller coaster ride, with encouraging highs and discouraging lows, but they said the first year is always like that. They have done four biopsies so far — a lab procedure that Gigi hates. None of them have shown signs of rejection.

The medicine to prevent Gigi from rejecting the transplant affects her immune system, so she’s in continual danger of contracting an illness. Nevertheless, she has never felt so good. She was nauseous every day for seven years but now feels fine. She works as a volunteer with Animal Rescue Recon. Last spring she joined the Brentwood municipal softball team and the Adams Middle School softball team. Her illness slowed her growth, so at 4’4” and 71 pounds she’s the smallest person on the team — certainly with the smallest strike zone that any pitcher has to face.

Hard times like the ones we went through have the positive effect of pushing us down to bedrock behaviors and attitudes. I felt that I was being held by God’s hand to an extent that I had never experienced before. Beneath the turmoil and anguish of those times, I maintained faith that Gigi would survive and thrive. Our daughter’s pitiful condition sometimes moved our friends to tears. They would ask me how I could keep it together. The fact is, I had no choice. Faith sustained me; I spent hours in the chapel and at all times maintained a state of continual prayer. “Though I walk through the valley of death,” the psalmist wrote, “I will fear no evil, for you are with me.” And so He was.

Read 2840 times Last modified on Sunday, 01 February 2015 18:06
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