Chronic Kidney Disease: A Mother’s Perspective
In honor of World Kidney Day, I would like to give you my perspective of my son Mikey’s battle with kidney disease. My journey began in 1998 when I gave birth to Mikey. It was a quick delivery that took one hour without any medication for the pain. Everything seemed normal and Mikey received an Apgar score of 9. The Apgar score is based on a scale of 1-10, and assesses how the baby is doing after birth.
Everything took a turn for the worse after that. His breathing was labored and he was rushed to the Neonatal Intensive Care Unit (NICU). The wait was unbearable. When the doctor returned, he said Mikey’s lung collapsed which could have been the result of the quick birth. He was being stabilized and would remain in the NICU under close observation. When finally allowed to see him, I was horrified at how he looked. He was in an incubator bed, hooked up to so many tubes and his body was swollen. I was devastated. A range of emotions clouded my brain.
The bad news continued. When I returned to the hospital to visit Mikey, I was optimistic. Remember, he got a 9 Apgar, I told myself. All would be well and my son will come home soon. The neonatologist sat me in a room by myself and explained that Mikey’s sodium level kept dropping. He said sodium is related to the kidneys so an ultrasound was ordered. The ultrasound revealed that his kidneys were not anatomically the size they should be. He said a nephrologist needs to examine Mikey and since they don’t have that specialist at the hospital, he will be transported to another hospital. What? Nephrologist? I watched as my little baby boy was taken away in the incubator, hooked up to feeding tubes, lines drooping from his tiny body while strangers took him in the ambulance to another hospital.
When my husband and I arrived at Westchester NICU, I could hear my son crying. It disturbed me. I was confused, angry, exhausted. This was a nightmare and I would wake up soon. We had to wash our hands and put on a gown before seeing our son. Things got worse. The nephrologist and her team took me and my husband into a small, crammed meeting room. She asked if Mike and I were related. Not finding her question amusing, I showed my discomfort in the question. She clarified that Mikey has a rare disease called autosomal recessive polycystic kidney disease (ARPKD) (affects 1:20,000) . I was shocked, crushed, confused, and asked that she spell every word as I wrote it down. Everything was spinning. I could barely catch my breath. I left the room hysterical. At some point, I remember the doctor handing me an ARPKD newsletter. She said I should reach out to this group. I did, and Colleen was there at the end of my lifeline. Kindness and understanding filled her words. Our ARPKD/CHF journey began.
Mikey came home 10 days after his birth. Everything was extremely confusing. The doubt, the questions, the medicines, the blood pressure machine were overwhelming. Was he crying because his kidneys hurt? Would he live? Which doctor should I call—the pediatrician or the nephrologist? How do I give him the medicine? It was a very difficult path ahead filled with anxiety, medicines and doctors. In the first week he was home, he saw 5 doctors—a pediatrician, an endocrinologist, a urologist, a nephrologist, and a liver doctor. It was a struggle to keep my sanity.
The years went on, the medicines were altered, the blood tests and scans continued. Mikey had anxiety every time we visited the doctor to get his blood drawn. His veins were small and several people would hold him down to get blood. When growth hormones were introduced into his regime, the needle anxieties continued. My husband and I tried different strategies to give him the needle with the growth hormone. More struggles. More anxiety.
Mikey was a participant in a research study conducted at National Institutes of Health (NIH), the U.S. medical research agency, for ARPKD/CHF. For a period of four or five days he was administered a number of tests to study this disease process. He returned to the study two additional times. Excellent data came out of the study, and I am grateful to the doctors and advocates who made it happen.
In any case, I refused to let any of the above stand in the way of my son’s future. Mikey knew that he took medicines because of his kidneys and needed to wear a spleen protector during sports and to drink a lot of water. I didn’t hold him back from playing sports. And he excelled in baseball, soccer, basketball, flag football and won the Presidential Fitness Award three years in a row! Even though he was told he could never play regular football, he had the opportunity to play a fifth quarter in eighth grade. It amazed me how he could take down a player twice his size! He had no fear and was driven.
Today Mikey is 21 years old and has a full life. He took a break from college but works part time and runs his own car detailing business. Although not ready for a transplant, he’s been on the pediatric transplant list since he was 17. He visits his transplant team at Mt. Sinai every six months and visits his nephrologist every three months. The blood draw dramas are behind us and he is strong when they are done. He looks great, is energetic, has a wonderful group of friends, and we love him dearly.
Gloria lives with her family in upstate New York.
