The Toughest Test

[question everything]

OCTOBER 25, 2008

The Toughest Test
By GAUTAM NAIK
The WSJ

GRAND RAPIDS, Mich. -- When Jennifer Carden was told that her unborn child had a rare and potentially fatal genetic condition two years ago, she was convinced that the diagnosis could be wrong and the baby might survive. Her doctors and husband disagreed. They tried, but failed, to persuade her to terminate the pregnancy. The Cardens' baby, Parker, was born on Valentine's Day 2007, and doctors said he had a kidney disease that often kills infants in their first year. But Parker survived and is now 20 months old. He has poor language and motor skills and may never walk. Already hospitalized three times, Parker's medical odyssey has stretched the Cardens' finances and put a huge strain on their relationship.


(snip)

On Oct. 1, 2006, when Jennifer Carden was 19 weeks pregnant, she went for a routine ultrasound at a hospital near her home in St. Clair Shores, Mich. The doctor told Mrs. Carden and her husband, Charles, that the fetus had enlarged kidneys and a portion of the brain was thickened. According to the Cardens, the doctor told the couple that their window to terminate was small -- just five weeks -- and recommended they see a specialist to confirm the diagnosis via another ultrasound and an amniocentesis. The diagnosis: A potentially fatal genetic disorder called autosomal recessive polycystic kidney disease. Mrs. Carden, now 31 years old, contacted the ARPKD/CHF Alliance, a patient group based in Kirkwood, Pa. She learned that ARPKD is a rare disorder and poorly understood condition; genetic tests for it became available only a few years ago. The disorder occurs in about one in 20,000 individuals, and up to 75% of babies afflicted with it die in the first year after birth. After that, their chances of survival are good. But more than one-third need dialysis by the age of 10.

(snip)

The Cardens already had a tumultuous family life. Each had an 8-year-old son from a previous relationship, and Mrs. Carden's first boy lived at the Carden home. The Cardens also had a child of their own, Jackson, then a year-and-a-half old, who was recovering from major abdominal surgery needed to stave off a life-threatening intestinal blockage. A few months earlier, Mr. Carden had moved 150 miles away to Grand Rapids to take a sales-training job with J.P. Morgan Chase & Co. His wife planned to join him later. The prospect of having another seriously ill child and the additional financial burden worried Mr. Carden. He suggested the couple terminate the pregnancy and try to have another child. When he first broached the idea during a kitchen conversation with his wife, Mrs. Carden flung his dinner plate into the sink and said: "I won't terminate. It's a marriage breaker."

(snip)


The doctors scheduled a Caesarean section for the baby, because they felt the baby might not survive if allowed to go to term. About a month before the birth, Mrs. Carden says a pediatric specialist in kidney disease told the couple to "prepare for a rough ride," saying that the baby would likely be on a ventilator right after birth. On the drive back from that meeting, she called a local church to inquire about last rites for a newborn. She also called her insurance company to see if her yet-unborn child could be added to her life-insurance policy, so that the burial costs would be covered.

(snip)

In August 2007, Parker's condition began to deteriorate. His kidneys couldn't hold on to nutrients, so he'd get dehydrated and had to drink two liters of water a day. He rarely slept through the night. He picked up infections and was often on antibiotics. He would eventually need surgery to install a feeding tube... Parker was born on the same day as a child in Virginia who had also been diagnosed with ARPKD. Mrs. Carden learned about the boy through the patient group and stayed in contact with his mother. She called their sons' shared birthday a "Valentine bond." But in March, the boy in Virginia died. Mrs. Carden says it was a stark reminder about "the mortality of Parker's condition."

(snip)

Indeed, it turns out Parker doesn't have ARPKD, according to his current geneticist, Helga Toriello of Spectrum Health Hospitals in Grand Rapids. She says Parker doesn't have any of the classic signs of ARPKD -- high blood pressure, an abnormal liver and multiple cysts in the kidneys. She says it's unclear what Parker has... Still, in the past few months, doctors have told the Cardens that their son now has about 60% of his kidney function. Because Parker may never walk, his mother has ordered a wheelchair. His life is a series of appointments, including physical therapy, occupational therapy, feeding therapy and language therapy.

(snip)

http://online.wsj.com/article/SB122238185398776759.html (subscription)


=========

As I was reading this, I wondered whether the McCain and Palin plan would pay for medical costs for poor little Parker for the rest of his life.

I also wonder whether poor little Parker may be in pain for the rest of his life, never understanding why he deserved such life.

[question everything]

1. Kick (nt)