Children's Kidney Disease Support Group |
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| Wednesday, August 20, 2008 | |
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CKDS stands for the Children’s Kidney Disease Support Group, a non-profit organization. We founded this organization to support families dealing with a loved one who has been diagnosed with kidney disease. There is treatment available today and we encourage you to make your wishes, dreams and miracles come true.
Our own wishes and dreams came true and we now have our own miracle, Dylan Ronald Worthen. We have dedicated our efforts with this organization to our son Dylan and other children like him and families like us.
My kidney was removed through a tiny port in a new minimally invasive procedure know as a laparoscopic nephrectomy. Thanks to the minimally invasive approach, my recovery was quick enough that I was able to care for Dylan in his hospital room. Dylan’s story actually begins long before he was born. We had gone from one fertility specialist to another for seven years before we finally became pregnant with Dylan. We had adopted two other children and were overjoyed when we learned that we were pregnant, and I was faithful in my prenatal care. When I went for the four-month appointment, the doctor ordered an amniocentesis, saying he saw something on the ultrasound that he wanted to check out. A second ultrasound revealed that the baby had an enlarged kidney, which was surrounded by what appeared to be a white cloud. Initially, the doctor felt that the condition was repairable, but two weeks later he gave us the bad news, our baby had multi-cyctic kidneys and the outlook was grim to say the least. He spelled out the possibilities:
We were devastated at the options that were laid out to us so we went home and weighed the options. We went for a second, and then third opinion. The answers came back the same. We could abort now, or the baby would die at birth. It was an agonizing decision, and we believed that there was no hope for us and that we were going to have to abort this pregnancy and that just about killed us. I went as far as calling a mortuary to have my son buried with my parents, who had died of cancer years ago and I knew he would be cared for by them. It just made me sick to think that I had a living baby in me and I could feel him kicking me and I could hear his heart beating, and why was this happening, but they wanted to take him from me. I didn’t get that. But then it became even more complicated when the physician called to say that abortion is not an option because the pregnancy was too far along and the specialist couldn’t say for 100 percent certain that the baby would die. We were stunned, and mislead. After being told three times that there was absolutely no hope for our child, we were suddenly hearing that there might be a glimmer of hope. We then contacted our insurance company and we were sent to Dr. Neil Silverman, MD, an out of plan high risk obstetrical specialist and medical director of inpatient obstetrics at Cedars-Sinai. Dr. Silverman, who I know call my "Guardian Angel", examined me and the baby. "There is a problem with your baby’s kidneys. Why didn’t they send you to see a urologist or a kidney specialist," he asked. I don’t know. Dr. Silverman then referred me to Dr. Andrew Freedman, Director of pediatric urology at Cedar-Sinai, and part of the hospital’s multi-disciplinary maternal-fetal Diagnosis program. After studying the case, Dr. Freedman explained that we did indeed have options, viable options. Dialysis was feasible, as was a kidney transplant for our baby. I quickly switched my prenatal care to Dr. Silverman, seeing him every two weeks. In addition , I began seeing Dr. Elaine Kamil, Clinical Director of pediatric nephrology at Cedars-Sinai, and Dr. Dechu Puliyanda, also a pediatric nephrologist at the hospital. I also refer to these doctors as mine and Dylan’s "Guardian Angels". These two specialists, along with transplant surgeon Dr. Louis Cohen, explained to us that a kidney transplant would eventually be a viable option for our baby, but not immediately. He would have to weigh at least 10 kilos (about 20lbs) before he would be strong enough to withstand a major operation such as a kidney transplant. We never ever considered an out of family donor for our baby and we just knew that one of the two of us would be our baby’s donor A test showed that I was a more suitable donor over Ron because of my smaller size; unlike adult kidney transplants, where the kidney is placed in the recipients groin area, infant transplants are placed into the abdominal cavity and my smaller kidney would be a better fit. Dr. Cohen, who lead the transplant team that would place my kidney into Dylan, suggested that I consider a new type of minimally invasive procedure for living donors. He then referred me to Dr. Gerhard Fuchs, Director of Cedars-Sinai’s Endo-urology Institute and a transplant surgeon who specializes in a procedure known as a laparoscopic nephrectomoy. The advantage to this procedure over the more traditional open procedure are numerous.
During my 30th week of pregnancy, I was admitted to the hospital and four weeks later, on April 11,2001 baby Dylan was born. He was delivered vaginally, something previous doctors had told me was impossible and came out breathing on his own. Dr. Silverman told me he was the strongest kid on the ward! Baby Dylan was admitted to Cedars-Sinai’s Newborn Intensive Care Unit (NICU) after two weeks because of our insurance plan. We then had Dylan transferred to a hospital located in Northridge, Ca. After a few days he went home but later to be hospitalized again. In August I switched insurance companies so I could bring Dylan back to Cedars-Sinai. On one of his visits to Dr. Kamil, we learned that he had very high blood pressure and needed to be admitted to the hospital in order to control it. Physically, Dylan looked great and you couldn’t tell by looking at him that he was a sick baby, but over the next few months he was in and out of the hospital. We and his physicians almost "willed" him to gain enough weight for the transplant and finally the efforts paid off! Thanks to the care of his highly specialized multi-disciplinary team of pediatric nephrologists, urologist, dietitian, nurses, transplant surgeons, and others, Dylan responded gaining the necessary weight and size. His transplant was scheduled first for April 26, then was postponed until May 21, the week following his first mothers day.
I agree wholeheartedly, the doctors, nurses ,surgeons and other team members at Cedars-Sinai made my little miracle boy happen, even after three other doctors had told me to abort. Without the Cedars-Sinai Team, we cant explain the joy and love that they helped bring our family! |
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