Category Archives: Blog

Patient-Centered Care: A Must Have for Our Kids

By Lee Vander Loop, Editor CP Family Network

When you read the words “Patient-Centered Care,” what comes to your mind? When I first encountered the phrase, I was confused. Shouldn’t all medicine be ‘patient-centered’ since it is about the patient, and if this is new, what was the approach before?

CP Research Study Seeks Parents & Caregivers from CP Community

These questions need answers. That’s why I was very excited about the nationwide study about patient-centered care. CPRN and CP NOW Foundation are embarking on a project funded by the Patient-Centered Outcomes Research Institute (PCORI) to help develop a community of people committed to the principles of patient-centered research for CP. Research CP is an educational series and agenda that will culminate in a one-and-a-half day workshop in Chicago that will bring together people from the CP community with clinician researchers to set a research agenda for cerebral palsy.

Best of all, they are asking parents and caregivers to participate and we’re honored to present this opportunity to our community. Registration for the first webinar is now live, so sign up today! A survey to collect top research questions and outcomes will be included in this project. The results of this survey will provide essential input for the workshop where participants will synthesize this input into a prioritized research agenda for CP. Completing this survey is an opportunity to have your voice heard in what’s important to you regarding the future of CP research.

Communication is Key with Doctors, Patients and Families

In 27 years of caring for my daughter with CP, I never heard the phrase “Patient-Centered Care” mentioned in conversations with a physician or clinicians. As I proceeded to research the topic, instances of doctor appointments with my daughter came to mind. As I reflected back on my 27 years of interactions with the medical community, I could easily identify appointments that reflected a ‘patient-centered’ approach and those that did not.

I was amused to discover that, although I was unaware at the time, many times I had forced the physician to have a ‘patient-centered’ approach in their interactions with me and decision-making issues regarding my daughter, through dialogue and communication. I had educated myself on my daughter’s multiple medical issues and easily communicated my concerns and questions to them.

Focus Turns Toward Patient-Centered Care in Medical Community

Before this initiative became a focus in the medical community, medicine was considered ‘physician-centered’ and doctors practiced a ‘community approach’ with little or no regard to a patient or parent’s individual needs or wishes.

The IOM (Institute of Medicine) defines patient-centered care as: “Providing care that is respectful of, and responsive to, individual patient preferences, needs and values, and ensuring that patient values guide all clinical decisions.” Picker’s Eight Principles of Patient Centered Care defines the primary aspects of patient-centered care.

In the article ‘The Values and Value of Patient-Centered Care’, published in the Annuals of Family Medicine, the author describes Patient-centered care as a quality of personal, professional, and organizational relationships. I consider the most important word in that phrase to be ‘relationships’.

When meeting a new physician, there’s always an initial awkwardness and communication challenge. Since the foundation of ‘patient-centered care’ relies on communication and mutual respect between the child’s caregiver and physician, it’s imperative that these initial hurdles be overcome.

Parents Need to Embrace Vocal Role with Their Child’s Physicians

As parents and caregivers to special needs and often non-verbal children, we must be the voice for our children. We must establish a rapport with the physicians and clinicians who will aid us in the understanding; decision-making and resolving of the medical challenges so many children with CP face.

With the time constraints faced by physicians, it can be a challenge to develop the dialogue needed to establish the partnership that is the basis of a patient centered approach. Parents and caregivers can help this process by researching and obtaining as much information as possible about their child’s condition. Be prepared. Make a list of your questions and concerns. Don’t be afraid to ask questions! Physicians are not mind readers. It’s the parent’s role to educate the physician on their child’s individual needs. You are the most vital part of the team when making decisions regarding your child.

Throughout the years of caring for my daughter and interacting with the large array of doctors and nurses that helped me maintain her quality of life, my relationship with her primary care physician and specialists evolved. Our relationship had become not just one of partnership and solidarity, we had become family, and when it became evident that the end of my daughter’s life was near, they wept with me. They were my hero’s and will be for the rest of my days.

Happy 10th Anniversary, CPFN!

By Lee Vander Loop

What an exciting milestone! As an editor of the Cerebral Palsy Family Network, I’m honored to write this blog to commemorate this anniversary and reflect on this past decade and what it has meant to me to be a part of this wonderful organization.

Before starting, I want to take this opportunity to thank all the founding families that make the CP Family Network possible. Without their unselfish contribution and support, we would not have this amazing resource for families.

To our families around the world, thank you for sharing your stories and your amazing Hero’s with us! You are the reason our network is the largest web-based organization in the world! You are the reason we exist.

In writing this, I was asked what, personally, were some highlights of the past 10 years of my role with CPFN.

More Than a Community, We Are Family

First and foremost, the highlight for me has been meeting and interacting with all the remarkable families that make up the CP Family Network. I’m in awe of what CPFN has become. Every day is a ‘highlight’ for me as I experience the daily joy of reading all the comments of love and support among our families. I have the honor of assisting families in their search for information and the pleasure of viewing the photos of all our inspiring and courageous Heroes.

Another unequivocal highlight through the years would be the outpouring of love, support and kind words I received from this community, after the passing of our precious Danielle. Thank you. Your thoughtfulness gave me strength and comfort and will forever be remembered.

When our daughter was born with CP my resources for information consisted of a book on anatomy and physiology and the Yellow Pages phone directory. Home computers hadn’t yet evolved and I was lost.

It’s Our Purpose to Serve You and Your Children

When I was approached by CPFN to join their team, it was an honor. Our partnership has provided me an opportunity to save other families from the frustrations I faced in my search for answers. Being editor of CPFN has enabled me to help other families acquire the information, network and support needed to empower them in caring for their children with CP.

CPFN’s quest has always been to unite families with the common goal of helping to improve the lives of children with cerebral palsy. My vision as Editor has become a reality! CPFN has grown to encompass families the world over, sharing their knowledge, stories and support.

I’m so proud and honored to be a part of this family!

Thank you for 10 Great Years!

10 Years After Lizzy’s Trial: Taking Care of Lizzy For Life. Thanks, Ken Suggs (p.3)

(Looking Back and Moving Forward – continued)

The doctor’s attorney asked questions about “studies” and past testing from others and how this case compares. They were hoping for some genetic connection for what happened to Lizzy. I wasn’t impressed and this expert was weak and seemed to hurt their case. The next person they called up was a nurse that was on the floor that night. They asked questions to build up the doctor. What kind of doctor was she? Has she ever had any problems with other birthing experiences? Does she conduct herself in a professional manner? Was she well-respected in the community? All great questions. Then my attorney asked two questions. Did she come into the hospital when you called her at 2:00 am? No, sir. Did she come in to the hospital when you called her at 5:00 am? No, sir.

“No further questions, Your Honor.”

They called up the next and last witness. Surprisingly, we had only begun two hours before at that point. My doctor took the oath and then sat down. This wasn’t a criminal case so there was no harsh punishment if she were to lose. This was a malpractice suit, which was a lawsuit against her and the hospital. The hospital settled a couple months before at our mediation. Had she agreed to a settlement, we would have avoided court. Our attorney walked out of our mediation and said, “How insulting– we are going to court!” He knew what he was doing but I was terrified.

I watched her on the witness stand. The way she blinked, moved her hands, adjusted in her seat, and the way her voice would crack. Again, they asked her questions about her stellar 25-year career. She mentioned that she delivered three babies that week with no problems. All healthy babies! With a big smile on her face. They asked her about the night I was there. She said she remembered getting those two phone calls but no one expressed any real concern about what was going on. They referred back to her deposition now and then. In her career, no one had ever brought a lawsuit against her.

Then they rested and our attorney stood up and walked over to an overhead projector. He just stood next to it and asked her this question.

“When you performed the C-section and you pulled Lizzy out, what color was the amniotic fluid?”

I looked at Damon…confused…again. Why on earth is this even a relevant question?

The doctor answered, “Clear.”

Our attorney asked, “Are you sure?”

The doctor answered, “Absolutely clear.”

Our attorney then turned on the projector and displayed the doctor’s deposition. He then asked, “Can you read to us what you said in your deposition about the color of the amniotic fluid, please?”

The doctor puts on her glasses and reads it aloud.

“The amniotic fluid was slightly yellow.”

I heard “Objection”, and “Your Honor, may I approach the bench?” It was clear that my doctor lied and they needed to do some damage control. Hey, where did that big smile on the doctor’s face go? We rested after a few more questions.

This meant that the closing statements would begin. I was feeling better. Where did the abuse accusation go?

After both sides finished, the judge spoke to the jury, like she did every day. This time was different. They were to have lunch in the deliberation room. This is where they would decide on our case. Then they left. Damon and I quietly left, went down the street to a fast food joint and ate our lunch. We sat and talked for a while. Then we got a phone call. Our attorney was telling us that the jury had reached a decision and we should come back to the courthouse. It had only been two hours.

We said from the very beginning that this was Lizzy’s money… Money that will provide care for the rest of her life.

We got back to the courthouse and sat down with our attorney in the middle of the room in one of the “pews.” He told us that this was not a good sign. Only deliberating for two hours is worrisome. As we were talking, one of the female defense attorneys came over to me. She put her hand on my shoulder, and said to me, “Mrs. Viele, I know that you are a good mom.” I said thank you and she took her seat.

Everyone assembled back into the courtroom and there was silence. The judge spoke to the jury and to the attorneys for a few minutes. Then it happened. The foreman handed the paper to the officer who handed it to the judge. She read it and gave it back. The officer handed it to another man (not sure who he was) and he read it out loud.

“We the jury find in favor of the plaintiffs in the amount of ________________.” (Our case was public so you can just Google it)

Damon and I just fell into each other and sobbed. I mean full on sobbing! Our attorney and his wife were crying. The jurors were crying. It was surreal.

The judge released the jury and that was it. We walked outside and some of the jurors were waiting for us, crying and telling us they were praying for us. Telling us it would never be enough but gave us extra on top of what we were asking.

We would have to go back to court in the next year and get Lizzy’s money. The doctor was going to try and appeal it but never did.

Before I get into money, I want to say this. I felt The Lord at every moment in that courtroom. For example, the judge that normally presides in Sumter (for some reason that I can’t remember) swapped time with our judge. Having a mother as a judge made me feel so much better. I remember her warm smile. Her name was The Honorable Paula H. Thomas. We ultimately give God all the praise and glory in our journey. His blessings have been abundant and we are humbled.

I was teaching fourth grade and I loved it. I would still be teaching and would be in my 16th year had Lizzy been born without complications. We would live in a normal-sized home just like our other teacher friends. I worked with so many wonderful women (and a few men) that supported me throughout this journey. I will always be grateful for their friendship and love. I miss them.

Damon and I decided that because Lizzy was starting preschool, and we just had Emily, it would be best for me to stay home. Going from two incomes to one was extremely difficult. This was in 2002. Three years before our trial.

We went back to court two more times before we would receive Lizzy’s money. It wasn’t until 2006 that we received it. All of it has been invested. My Astro van died picking up Emily from preschool in 2005. We traded it in for a beautiful brand new Honda Odyssey. It was perfect.

We had a home built in 2007. Damon had an idea of what he wanted for Lizzy. We definitely wanted a therapy gym for her, her own ADA (Americans with Disability Act) bathroom, and a good size bedroom for her to move around in. Lizzy is legally blind so it wasn’t going to be glamorous because that isn’t what she needs. In fact, nothing in our life has been glamorous, but that’s not what matters.

With the arrival of our settlement, we had a life care planner help with what we would need for Lizzy for the future. Basically, we went to court to receive a stipend each month to care for Lizzy. With what we won for Lizzy, we can care for her for the rest of her life.

We said from the very beginning that this was Lizzy’s money. We want to use it in a way that she would be proud of us. And we have done just that. We are a charitable family. We see a need; we will help fill that need. That is what Lizzy would want – I’m sure of that. We try to be good stewards of her money.

We know that people are curious, so we have always answered questions honestly and openly. We have never flaunted or been showy about it. Damon and I are the same people that we were before we won that day.

We have experienced people who are “jealous” of what we have. Some of them didn’t know about Lizzy and some of them did. Those that do know also understand that we would give every cent back to have our Lizzy say “I love you,” or “Hey, Dad”. In a heartbeat, every penny! I would also say to them, “Let’s trade lives for just an hour.” You can tell when someone is genuine and sincere. They ask about Lizzy and really want to know how she is.

It’s been 10 years since the trial, but the emotions still come up as I write this. We fought tooth and nail for that little girl.

Lizzy will be 16 this year, and she has everything she needs.

We are grateful. We are humbled. We are ready.

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