At Folia, we’re on a mission to empower the lives — and share the stories — of healthcare’s unsung heroes: parents and caregivers. Today, we're excited to share the story of Chad, an amazing dad and superhero caregiver who jumped over every barrier to access the best possible care for his child - he even donated 20% of his liver!
In 2001, Chad's son Ethan was diagnosed with biliary atresia, a liver disease, at a mere 3 months of age. Now 16, Ethan is doing great, and Chad is here to share his secrets of success to all parents who may need to learn how to navigate a team of doctors, or the complexities of health insurance, to become superhero caregivers for their children.
Early days: the diagnosis
N: Chad, thank you so much for making time to tell us the story of your journey with Ethan’s care. Do you mind taking us back to the beginning, when Ethan was a baby?
C: When Ethan was two months of age, on September 4th, 2001, we realized that he just didn’t look too healthy. After questioning the pediatricians about his jaundice, we had a feeling that was simply new parent’s intuition. We realized that something wasn’t right. When we brought him in again, we were told by the pediatricians that we had to take him to Children’s [Women’s and Children’s Hospital of Buffalo] for further testing. After doing some bloodwork, we were told that Ethan wouldn’t be leaving the hospital, and they were concerned that he had some type of liver disease. There were about 20 different diseases that they had to rule out. Biliary atresia was the worst, but they didn’t think he had it. So Ethan spent 5 days in the hospital, going through a battery of tests, and ultimately we were checking off every diagnosis. The only one that remained was biliary atresia. It affects only 200 newborns a year in this country.
So it was a very rare diagnosis. Children’s Hospital in Buffalo was familiar with it, but they hadn’t treated many children in the past with the life-saving surgical procedure that was needed…and it was needed within the next 2-3 weeks, because we were already late in the game of being diagnosed. We did some searching and found a Dr. Peter Altman, who had brought the Kasai Procedure to the US, and had really pioneered it here. Dr. Altman was, at the time, the Chief Pediatric Surgeon at the Morgan Stanley Children’s Hospital in New York City.
For as rare as a disease as biliary atresia is at birth, Morgan Stanley was seeing 12-14 patients a year, so they were considered a high-volume center. On September 9th, 2001, Ethan had his Kasai performed there. We all know what happened 2 days later, on September 11th, 2001, in New York – it was a very stressful time for all of us. Luckily, Ethan did very well coming out of the surgery. It established its medical goal of allowing Ethan’s liver to drain, but we were told it was only a bridge, as most of these kids require a liver transplant by the age of 2 years old.
On June 6th, 2003, I had the honor of donating 20% of my liver to Ethan for a successful liver transplant. It was also performed at Columbia Presbyterian, by Dr. Jean Emond, who had actually pioneered live donor liver transplantation on the team that performed the first one in Chicago.
Finding patterns in chaos: managing complex care
N: It seems like it must have been overwhelming. How did you manage to coordinate the care while you were first learning about Ethan’s condition?
C: Managing the doctors and learning how to have the flexibility to see the right ones really is what has brought me to my passion for healthcare today. I quickly realized how fast the avalanche hits when someone is diagnosed with a chronic disease – how quickly you’re under water in trying to navigate the healthcare system, let alone the insurance.
N: With everything happening so fast, how did you figure out the insurance?
C: Right after Ethan was diagnosed, we were told we had an HMO that wouldn’t allow us to go out of Buffalo for care. We were allowed one surgeon to perform the original surgery, but he had only performed it one prior time and was unsuccessful!
The doctors in New York continued to press us to come, and said they were willing to accept whatever our insurance would pay the doctor in Buffalo as payment in full. They told us they simply needed to make sure he could get to New York. The insurance company still said no.
That’s what got me interested in understanding the behind-the-scenes workings of the insurance industry – why were they hampering my son to receive the medical care that everyone agreed was in his best interest?
After 2 internal appeals and an external New York State appeal, we won the right to go see our physicians at Columbia Presbyterian. Upon winning the appeal, we went to Columbia and had his first surgery performed. We were told by Dr. Altman that they were going to work with us to form a multi-disciplinary team of care to transition Ethan into relationships that would allow him to get to the right individuals to perform his liver transplant.
N: And then you could take a sigh of relief.
C: As a parent, when you feel very comfortable, you know that you’re in the right place. That’s what occurred for us in New York. The other thing that really helped was that we had a husband and wife team that ran the pediatric GI team in Children’s [in Buffalo], who were very supportive in getting us to go to New York or Pittsburgh for the Kasai, since they knew that Ethan would be in better hands with such a rare disease.
Our relationship with them has continued to this day. It’s all about establishing these relationships of trust, and networks of care. They need to respect your right to challenge, to ask questions, and they need to speak in a language that you can easily understand. That’s the relationship that we have established with Columbia, and with Drs. Susan and Robert Baker of Children’s Hospital of Buffalo over the past 16 years. It’s just been a successful formula for us.
Support systems: the importance of teamwork
N: I’m sure that despite the wonderful people you’ve worked with, though, managing the care can be overwhelming. How do you avoid getting stressed out by Ethan’s condition?
C: Probably the greatest stress that I had was that long process of making sure that I had coverage for his care. It is a very frustrating situation, and that is why I created Healthcare Navigators of Western New York, because I do believe that there is a systematic approach to engaging with insurance from the point of diagnosis to treatment to long-term care. You can set a clear plan from the get-go.
N: What else helped you?
C: The internet was one of the greatest tools for me starting out. I was also able to reach out to other family members who had extra time to start doing research, and my sister lived in new York City, so that was helpful. Networking became very important to me.
But what I found most helpful was that as busy as these physicians were – I called the heads of the GI departments in Pittsburgh, Boston, Toronto, Cincinnati – every one of them returned my phone call within just a couple of days. What I never will forget is one of them saying to me, “None of us are out soliciting business. We don’t have to. We all know each other, and if you’ve already talked to Dr. Altman, that’s where you should go.” I learned that many of them were simply out there to help the children – there wasn’t any arrogance, which was very comforting.
My wife and I came up with a plan that she was going to spend time with Ethan in the hospital and managing his care plan, while I was going to work the system to make sure that everything was covered, and that we were getting to the right centers of excellence. To this day, those roles haven’t changed at all. When it comes to managing the care, the doctors, the medications, there’s no question – no one does it better than her. When it comes to questioning the studies, questioning the medications and the procedures, and understanding who’s going to be setting eyes on his records or doing his procedures, that’s my role. So we’ve really created a good plan of care. We both know our roles - it’s very well defined, and unspoken at this point. It just works very well.
N: Once Ethan was ready to go to school, how did you fit that into your system, so that he could be a normal kid?
C: The school part was challenging at first. I think there was definitely a learning curve on the staff’s part when Ethan was in preschool. For us, it was about constantly asking questions and making sure that medications were being given at the right time. Certain individuals took offense to our constant reminders and check-ins, but we quickly learned who the go-to people were.
Even today, we have an understanding with the high school that Ethan might be late, as he was this morning, because he has to have labs done, and they have to be done at a certain time. I think it’s a matter of having open communication with the teachers every year, and the nurses, and everyone at his overnight summer camp – but not trusting that one conversation is going to do the trick. You don’t want to question someone’s care, but you need to ask them to be part of your team of care. It’s a better approach than telling someone how to do their job on a day-to-day basis.
Do you know a superhero caregiver?
Give us a holler at firstname.lastname@example.org. we'd love to share their story.
Reaching out: helping others establish their own processes and networks of care
N: How did this whole experience lead you to start Healthcare Navigators of Western New York?
C: I think that when people are turned down by insurance, they don’t realize that the coverage of care for a loved one is a business for the insurance company. I think sometimes with healthcare, we allow our emotions to get in the way, and we allow things to get personal. At the end of the day, I’ve realized it’s all contract-driven. It’s a matter of figuring out why, based on your contract of coverage of care, you’re entitled to the coverage that you’re requesting. The coverage contract might state that if a medical need is due to a congenital birth defect, then you’re covered for a certain procedure.
There was a point when I started this whole process that I got very angry and very hostile, but I quickly learned that it completely closed off all communication. And you must keep a line of communication open. There are a lot of people who want to help and do the right thing, but insurance is a business. It’s up to you, as an educated patient and consumer, to understand the policy as much as possible. We help people to do this in a very efficient way – and to this day, we have not lost any appeals to insurance companies.
The first thing that I tell everyone to do is to get a case manager when you have a chronically ill family member, especially a child. That way, you’re not always having to talk to a new rep every time you call in. We’ve had the same case manager for almost 16 years that we have a great relationship with. She knows our case manager the whole way through, so things are efficiently handled for both us and the insurance company. And we’ve had great success with setting that up for other people.
Looking ahead: college and beyond
N: It’s amazing that you’ve been working together so long…and now Ethan is growing up! He’s starting to look at colleges – how are you thinking about making that transition of care ownership to him?
C: With Ethan getting older, we’ve always made it a point for him to understand his condition. The interesting thing about transplantation is that you’re trading one disease for another chronic condition that requires a lifetime of care, so there’s never an ending point. We used to be worried that he would be scared, but he’s been able to establish a great relationship with his team at Columbia, especially Dr. Steven Lobritto. Dr. Lobritto stresses to Ethan the importance of taking medication, why he’s taking his medication, how he might feel.
He does want to go out of the area for college, and he needs to understand the signs that he needs to watch for, when to be concerned, and when to bring it to someone’s attention. He’s becoming a patient who is very involved in his care, and he’s learning not to be scared to ask questions – before he takes a medication from anyone he’s not comfortable with, he will have them call his transplant center. We feel that we are in a very good place because we’ve kept him very involved – he’s always been part of every decision we’ve ever made.
N: Have things changed in how you take care of Ethan?
C: As I see technology evolve, I think that programs and applications such as Folia are of utmost importance to a caregiver’s overall care. All too often, we run very hectic lives, and it’s going to be applications like this in the future that are going to aid in efficient care. Tools like Folia will also help doctors to be more efficient, allowing them to have more robust conversations in the short timeframes that most doctors unfortunately have to contend with when they see their patients.
For me, the Appointment Guide is great. It was great to have something, when I walked in the room to meet with the physician…it presents itself to the doctor that Chad’s here, and he’s got his info prepared. I think you earn a lot more respect when you approach your child’s care that way. It reminded me of things to ask, and it kept me on-target, rather than going off on a tangent and walking out and saying, “God, I forgot to ask that – I’m dying for an answer, and now how long is it going to be before I get it?” I felt that we had a very complete conversation, which is especially important when I travel to new York.
Reflections: advice for others just starting out
N: Looking back, what have you learned? Do you have any advice for other parents going through the process of taking care of a child with a chronic disease?
C: I think the first lesson I learned as a new parent is that the parent intuition is the strongest aspect of your child’s care. If you don’t feel that something is right, it probably isn’t. If you don’t feel listened to, find someone who is going to listen to you, respect your concerns, and spend time with you. In this day and age, that can be challenging, but keep pushing to find that supportive team that you feel will meet your goals.
And have that conversation about what your expectations are – and if they feel that they can’t meet them, go find someone else who can. We did that when we changed pediatricians – we needed to make sure that we could get same-day care. If that’s a goal that can’t be met, we’d like to know that upfront.
When it comes to insurance, it is your right with no charge to request a case manager from your insurance company and get to know them. Develop a relationship with them. They love getting holiday and birthday cards – it’s all about just becoming a friend, a part of the family of care.