Meet the Paglio Family…a 2013 National Kidney Walk Ambassador!

Share your spare leaning lookJames is one of roughly 750,000 people in Maryland who suffer from some form of kidney disease. We knew during my pregnancy that something was wrong with his bladder and kidneys because there was very little amniotic fluid and the ultrasounds showed abnormalities. When he was born, he was already experiencing kidney failure. We thought we were emotionally prepared for his birth and the potential complications, after all, he’s our 6th child and babies were not new to us.

We were thrilled when he was born.  It was Father’s Day and he was the perfect gift.  He looked absolutely healthy. Everyone, all the doctors, breathed a sigh of relief.  We thought we were in the clear. Just to be safe, the pediatric urologist performed a series of tests to track his urological flow, so to speak.  We were devastated with the results.

James was diagnosed with severe bilateral renal dysplasia accompanied by hydronephrosis caused by grade 5 vesicoureteral reflux.  It’s quite a mouthful, but basically it means that his kidneys are underdeveloped and abnormally developed because of high levels of urine that backed up into his kidneys.  This all started at a critical developmental point in utero and the damage it caused meant that his kidneys would never function at a level necessary to support his body.

With that diagnosis, James went from being a beautiful healthy baby getting ready to go home, to a beautiful, but critically ill, baby with teams of doctors working to ensure he survived.  There were neonatologists, urologists, geneticists, and there were doctors we had never before heard of — nephrologists.

Even though we knew before James was born that there were going to be Share your spare standingcomplications, we really had no frame of reference for the extent of those complications.  We have no history of kidney disease in our families.  We have no history of diabetes in our families.  We had five wonderful, healthy children before James; and James just does not fit in with our standard image of someone at risk for kidney disease.  And yet, there he was, in the NICU attached to wires and tubes getting venous blood draws every 6 hours to check for renal function.  The nephrologists started telling us things about James’ future.  They used words like, feeding tube, dialysis, and transplant.  We were so afraid for our son.

Like any emotionally shattered and frightened mom, I went home and started researching kidney disease on the internet.  I found that it was incredibly difficult to find information about kidney disease from the pediatric standpoint.  I was thirsty for information, and almost every book or article I could find, looked at the disease from an adult perspective and failed to take into consideration the unique challenges facing pediatric patients.  Then I came across the National Kidney Foundation’s website.  There I found the information I needed. The research and knowledge was compiled and laid out in a way that I could understand.  I used that information to explain James’ health and prognosis to our families and friends. More importantly, I used that information to advocate for my son and work with his doctors. I learned as much as I could about his disease, as fast as I could, so that any decisions we made about his care, would come from understanding instead of fear.

James had his first surgery at a week old and was stable enough to come home at less than a month old.  When he first came home, we still had to take him to the doctor for blood pressure checks, weight checks, and lab draws about every other day.  As he’s gotten bigger, we’ve been able to taper off to every 2-3 weeks with a goal of going a month between checks.  James takes eight medications three times daily in addition to weekly injections to help what little kidney function he has and deal with his secondary diagnoses of hyperparathyroidism, hyperkalemia, and severe anemia.  He is basically 100% fed through a tube and receives therapy to help him learn to talk and eat.  This is his normal. He takes his meds like a champ and never ever cries when getting his blood drawn.

James and Mommy walking with the NKFJames is nearly two and has lived his whole life with kidney disease. This time has been such a blessing.  We look at James as he defies the odds and we feel lucky.  With every milestone he meets, every ounce of weight he gains or every inch he grows and with every good lab draw we are thankful. But we know it won’t last.  He will outgrow his kidney function and his health will deteriorate.  We know this and we dread it.

It’s a very lonely feeling when you have a chronically ill child.  But we have found kindness and support from our friends and military family. We have found understanding and a sense of community with NKF of Maryland. We walked with family and friends in the NKF Kidney Walk and raised almost $1,700.  I’m proud of that, but this next year I want to do so much more.

Research funded by organizations like the NKF has led to wonderful advances in care.  Not long ago CKD (Chronic Kidney Disease) and ESRD (End-Stage Renal Disease) were death sentences. But thanks to the NKF, there is the possibility of lives lived well.  Instead of mourning his loss, we get to enjoy James’ life.

However, we still need a cure. James is stable right now with the help of a lot of medication.  When he weighs enough, he will get his first transplant. But that transplant is a treatment, not a cure.  James will likely need two or three transplants throughout his life.  Each of those transplants will mean that James’ health has declined. Each of those transplants will carry the burden of immunosuppression and increased chances of cancer and other diseases. Each of the transplants will mean time spent away from family, time in the hospital and time spent every day taking just the right balance of medication to keep that kidney from rejection. Each of those transplants is borrowed time. And every one of those transplants will mean finding a selfless living donor, or relying on the heart wrenching gift of a deceased organ donor. Share your spare big smiles

There have been tremendous advances in medicine over the past few years that have allowed our son to live and thrive. With the continued efforts of the NKF, I hope that my son will live to see, not just a treatment for his disease, but a cure. Thank you so much for all your efforts to make that cure his reality.

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5 thoughts on “Meet the Paglio Family…a 2013 National Kidney Walk Ambassador!

  1. Your story is very touching. It brought tears to my eyes when reading it because two of my children and I were born with kidney disease. I am 50 now, but I was born with severe reflux at a time when very little was known. I had grade 5, and by the time I was 3 I had had 3 major surgeries. The last was a bilateral re-implantation of the uterers. I went on to have 3 beautiful children. My second child, David, was born with renal failure due to losing 40 percent of his blood volume. I had vasa previa which caused his bleeding at delivery. At birth, he was hospitalized for 2 months. We were told he would someday need a transplant. Fast forward, and today, at age 21, he is doing very well. No transplant yet. He has to be very careful with his diet — he has eliminated all heavy animal protein and sticks to a strict plant based diet, along with some fish. His doctor marvels at how well he is doing and just took him off his medicine temporarily to see how he does without it. He plans on attending law school after graduating from college. My youngest had grade 4 and is very healthy today. He is a division 3 college athlete! I am healthy today,too, and like my son, am very careful with my diet. I share my story with you to bring some hope. Sending thoughts and prayers for your precious boy. Keep the faith! In health, happiness, and encouragement, Tracy (www.beefitwithtracy.com)

  2. I have tears, because I was this Mom 7 years ago. I too, have a son James Thomas born with Kidney Disease. Our story mimics yours except he was born with only one kidney & that consists of only a 1/3 healthy portion. It has been a long rough road at times, with anxiety at every blood draw and feeling very lonely not understanding everything our team of Doctors tell us. I can tell you now, 7 years later, James’ kidney is still stable. He has had a surgery to correct his reflux & he is off several medications now with only two remaining and no longer needs me to give him injections. The doctors were positive he would need his transplant at 2, 4, and here we still stand. He is a wonderful normal 7 (almost 8) years old second grade boy. He is restricted from some things, but he is happy and holding his own. Not a day goes by that I wonder “When?? When will the saga begin??”. It is a tough emotional rollercoaster but keep your head up. I am a very emotional dedicated -and have been told a bit nerotic Mother. I am constantly researching & trying to learn & understand. We have no history either in our family, they call this simply a birth defect and I did nothing different nor had any complications during my pregnancies~We also have two healthy girls, totally normal kidneys. Stay strong and keep the faith, we all have angels & these James’ are not alone!! 🙂

  3. I can relate to each of your stories and I feel your heartache. I was pregnant when I was 18 after a severe car accident leaving me with a temporary spinal contusion (bleeding on the spine), bleeding in the brian and paralyzed on my left side and with some internal injuries as well. When I was pregnant with my first baby at 18, I miscarried it a few months later. Thinking that my car accident was the reason for this. I was 19 when I had gotten pregnant with my son who is now 7 years old. I had so many complications with my pregnancy, they were uncertain that I would even be able to carry full term. When I was 4 months pregnant they did the ultrasound and found fluid around his right kidney. They had different theories about what the issue was, they first thought that he had 2 kidneys on the right side, then they realized that it was the hydronephrosis (the kidney was that enlarged that it looked like 2). I seen a neonatologist every 2 weeks till the last month of my pregnancy, then every week till I delivered. They told me that if I did not have my son before or on my due date they were inducing me. The good news is that they did not need to induce me as I started having contractions on my own. Once he was born they started doing tests right away and by the time we were discharged from the hospital they sent us to Hershey Medical Center for additional testing. They did a test where they put dye in his system via catheter and followed the “urine trail” as well as many other tests. They soon discovered that he has Stage 5 Reflux of the right kidney and right ureter. They put him on antibiotic therapy for the first 10 months of his life then decided that since there was to much scarring and tissue damage of the kidney that it was time to do surgery and take the right kidney and right ureter out. He is now 7 years old, we have had our up and downs but overall he is doing well! I wish everyone the best of luck with their children and just remember there are others out there who are going through the same situation. Talk about these types of issues, it will only help with awareness!

  4. It’s wonderful to find other mothers who have gone through what I’m experiencing. I had twin girls on Valentine’s Day and one lost oxygen during delivery. She was transported immediately to a children’s hospital, where they were able to protect her brain with a cooling protocol but her liver was seriously injured and her kidneys were devastated. On day 14 doctors began dialysis; I didn’t think she would survive the day, waiting for surgery. Words really can’t describe how terrible it was, seeing her so swollen and unresponsive.

    Fast forward four months: she’s home and doing phenomenally well, considering. She takes about a dozen medications throughout the day and receives continuous feeds at night, but she’s catching up developmentally and is even breastfeeding during the day! Most importantly, she’s growing and we’re halfway to transplant weight!

    Even with her success — and I marvel every day at how fortunate we are — it’s incredibly difficult. So, my heart goes out to each of you, and I wish you and your families all the best.

    • My son is 15 months old and will be looking at surgery within the upcoming months to correct his grade 5 reflux. Likely the reimplantation of his ureters as he is also considered stage 2 ckd. What hurdles did you face with this surgery or any advice you have to protect his kidneys from further damage?

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