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Julia Roberts
BY Julia Roberts

What You Need to Know: Information and Support for Parents of Children with Kidney Disease

Photo Credit: pkdcure.org/

When I was packing to go home from the hospital after the birth of our second child, my husband and I were told by the doctor on the phone that our new baby had an “incurable kidney disease” that would “require her to have a kidney transplant early in her life.” The doctor advised us to consult with a nephrologist.

I laugh a little bit now at my response: “What’s a nephrologist?” We were shocked, and we were just as devastated when we learned three months later our son had the same condition.

It’s been a long way from that day at the hospital when I asked the doctor on the phone, “What’s a nephrologist?” There are world-renowned doctors in kidney medicine I call friends, and we work together to educate families about polycystic kidney disease (PKD). My kids have a rare form called autosomal recessive PKD. Both my husband and I are carriers (we do not have the disease itself) and unknowingly passed it to our children. Part of their disease combination is an eye disorder and CHF-congenital hepatic fibrosis. They will need liver transplants one day as well.

Impact of Kidney Disease

My children’s lives have been majorly impacted over the years due to the disease as well as various treatments they’ve had to endure, including the following:

• At birth, one started medicine to control out-of-control high blood pressure.

• By age four, both were on at least ten medications each, with multiple therapy appointments for OT, PT, speech, and vision (they have another disorder of the eye called ocularmotor apraxia).

• By age five, both were in acute renal failure, and at age seven one had to go on dialysis while waiting for family and friends to be tested to donate a kidney.

• By age six and seven, both were in play therapy and being evaluated for kidney transplants.

• At one month past an eighth birthday and on an eighth birthday, our children received kidney transplants, both living donor kidneys by friends who were tested after us parents were disqualified.

• Both have had to endure mental health issues, including depression, and learning challenges as a result of growing up with a chronic illness.

• It was difficult to stay on track socially because of absences due to illness/energy, hospitalization, or simply because they had so many appointments to attend.

A Parent’s Perspective

There have been a lot of tears and a lot of hurdles in their young lives, but a lot of triumphant joys too. Our children are wise beyond their years and have a resiliency we don’t see in some adults. We try to live life with more gratefulness because of what they endured. We have an expanded view of compassion and understanding for others, which never hurts either.

My advice to parents is, first and foremost, practice self-care. While it’s the first thing to go (along with nurturing relationships) because of lack of time, self-care is right at the top of the most important things to obtain and keep. I even wrote a post about self-care, “Is Self-Care Possible in Special Needs Parenting?”, because many people in the throes of chaos don’t think it’s possible. It is, but it takes great planning.

Organizations to Connect With

Information for Parents of Children with Kidney Disease: National Kidney Foundation

The National Kidney Foundation (NKF) is an organization that serves all those with kidney diseases by providing general information. Its resources are deep, including phone support in English and Spanish. The foundation has complied a comprehensive list of resources for people looking for information on kidney disease and kidney health. They have included everything from insurance information and prescription cost assistance to clinical trials and medical alert jewelry.

Information for Parents of Children with Kidney Disease: PKD FoundationThe PKD Foundation represents the disease my kids have. As patient organizations go, it is pretty terrific. I have served with this organization in a volunteer role for fifteen years, helping parents new to a child’s diagnosis and serving on the board for nine years.

Other Recommended Resources

Kidney diet cookbooks by DaVita.

• List of cookbooks for Kidney Diets on Amazon.

• Transplant Games: If you’ve had an organ transplant, you’re eligible to try to qualify for the transplant games.

• Support for Special Needs: This is the site I started in 2010 with Dawn Friedman, who is a counselor in her own practice, Building Family Counseling, in Ohio.

Kidney Disease: A Guide for Living by Walter A. Hunt, PhD (author) and Ronald D. Perrone, MD (foreword): A practical guide to kidney disease by two former board members from the PKD Foundation.

• Trauma Through a Child’s Eyes: Awakening the Ordinary Miracle of Healing by Peter A. Levine, PhD, and Maggie Kline: Our children have suffered with PTSD as a result of their medical trauma and interventions. While it was extremely difficult to read this book, because some stories hit very close to home, reading it made me a better parent and caregiver. I better understood what causes some trauma and, more importantly, how to help my children through it.

Julia Roberts

Written on March 29, 2017 by:

Julia Roberts is raising two teenagers to be their own advocates as they navigate the medical and educational community. She owns an advertising agency and is a writer, advocate and community builder. In 2010, she co-founded SupportforSpecialNeeds.com, a site for parents and professionals about kids with special needs. She’s worked with clients for nearly 20 years at her marketing firm, the Roberts Resource. She’s married to Julian and lives in Atlanta, Georgia. She’s an activist for kids with disabilities, organ donation, suicide prevention, and removing the stigma against mental illness. She has been involved with many charities over the years and speaks frequently on the topic of raising kids with special needs to parents and healthcare professionals.
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