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Melanie Cole (Host):    Shriners Hospitals for Children in Portland provide specialized care for chest wall abnormalities of all degrees. Their team of experienced pediatric specialists use a comprehensive and collaborative approach to treatment, to ensure the best care possible for children with chest wall abnormalities. Welcome to Healing Heroes PDX, the podcast series from the specialists at Shriners Hospitals for Children in Portland. I'm Melanie Cole and today to learn more about this condition and gain insight on what parents can expect, we're joined by Dee Dee Dolp. She's an On-Call Physical Therapist Asssistant, at the Portland Shriner's Hospital and a parent of a former chest wall patient Davis.

Dee Dee I'm so glad to have you join us today. It's always so refreshing and interesting to hear a parent's perspective regarding their child's care. Can you start by telling us your story? Tell us a little bit about your son and his diagnosis and how did he respond to receiving that diagnosis?

Andrea (Dee Dee) Dolp, PT (Guest): Hi, Melanie. Thanks for having me on the show. I'm eager to share my positive experience. Davis is now a 13 year old boy. He's fun, athletic, smart, active, busy, but being human, he also has a chest wall imperfection called Poland syndrome. It's a partial absence of the right pec muscles and it causes this uneven pull on his sternum, which protrudes out a little bit towards the left.

Davis doesn't really mind this diagnosis. It hasn't made it difficult for him in any way. It's been a little difficult for us to find gear that fits and clothes that fit right. And it is concerning for us because the heart and lungs are in there. But as far as his handling of the diagnosis, it's made it a little hard for him to push ups, but who really likes to do a push up anyway. He's always convinced his coaches to be stood up and become really good at that.

Host: What a great outlook and attitude. So, Dee Dee prior to his diagnosis, were there any signs or symptoms that led you to believe something was wrong? When did you make the decision to bring your son to the Portland Shriner's Hospital for care?

Dee Dee: Well, we didn't really notice anything until he was about four years old and had gone through growth spurts. As a baby, he was one of those kids that when they would cry, his chest would expand and contract and expand and contract a little more than you would normally see, but he didn't cry very much so we didn't think anything of it. But about four years old, he ended up in a growth spurt and we noticed at the pool that part of his chest was kind of sticking out about half an inch more than the other side. And so I was a little concerned about it, just because as I said before, the heart and lungs are protected by that chest.

And so, we ended up taking him in and getting an opinion from his pediatrician. She diagnosed him with Poland syndrome and that's basically a chest wall imbalance. Whereas I mentioned before, there's little or no right pec muscle. And the left side of the sternum pulls a little stronger and it was pulling that sternum out.

So, her recommendation was to have surgery on his sternum when he was about 12 or 13 years old. Well, that didn't fit super well with me. He's very active and I couldn't fathom the idea of opening up his chest wall at a very busy age. And so, we decided to get a second opinion from Shriners. Because I worked there, I knew that they had great thoracic specialists. And so, Dr. Zallen there recommended bracing to kind of even out the sternum and keep from that pull at his teenage years. And we did get one more opinion because the opinions were so different and that opinion was to do nothing, but that is difficult for us because he likes to play Lacrosse and he has all these chest guards and things that were hard to fit. And so we chose to go to Portland Shriner's Hospital because Dr. Zallen had the most reasonable option for our family. And what we thought was the safest and best decision for him.

Host: Well, then let's talk about that treatment that was outlined by the Portland Shriner's Hospital. We've heard so much about comprehensive care that they offer. Tell us how this relates to your experience. What was it like for you guys?

Dee Dee: Well, Dr. Zallen and Janell his nurse assistant were amazing. They saw Davis for many years before it was time for him to be braced. They saw him at six and eight and 10, and then at about 12 and a half, they did a really comprehensive treatment program, which was that he was going to wear this brace for nine months, for 23 hours a day. He wouldn't wear it when he was bathing or swimming or sports, but for the most time he wore it otherwise. They ordered the brace right there through the pediatric orthotic and prosthetic services, which is right on the Portland Shriners Hospital campus. And we went in and met with Todd in the pediatric orthotics prosthetics place right there on campus.

And Todd was incredible. He fit the brace to be comfortable for Davis. It wasn't a huge brace. It was a relatively small front to back chest pressure brace. The connectors were on the side and it wasn't as bulky as we had imagined it would be. It took a little getting used to at first, but Davis wore it for about nine months around 23 hours a day.

And we couldn't even tell that it was under the hoodie. He had a dry fit shirt underneath and then the brace and then a sweatshirt. And you really couldn't tell. But what was really nice, was we noticed the change really quickly. About three or four weeks in, we could tell that the sternum was evening out and it just felt so good as a mom to have that you know, going back to normal so that you knew that chest would be protecting the heart and the lungs. So, we did break the brace one time and speaking of the comprehensive treatment at Portland Shriners, and the pops. Todd fixed it right up. We went in, and told him it was broken and he fixed it right on site.

So, it was pretty easy for a teen boy and a mom to manage. And it was very effective. And here we are about a year later. He has not worn the brace for about seven months, consistently he wore it at night for a while, but he hasn't worn it for a long time and he is still very even.

Host: Wow. Such an experience. So, in addition to being a parent of a patient, you're also an on-call employee at the Portland Shriner's Hospital. How did it feel being on the other side and witnessing the level of care firsthand?

Dee Dee: Because I'm an employee, I obviously love Shriner's Hospital in Portland through the eyes of the employee. I didn't think twice about the quality of care because it's the quality of care that we've always given, but I was shocked to feel even more compassion as a parent of a patient than I expected. I hadn't thought about what it would feel like to be on the other end until I was there, but it was better care than I even expected. And I came in with really high expectations. So I've always been impressed with their care and I've had the opportunity to visit the Portland Shriner's fracture clinic, their radiology department. And recently even Davis had a splint made by an occupational therapist after a Pogo stick accident.

But each visit that I go to Shriner's Hospital, they've continued to offer just high-quality care. I'm so honored to be an employee of that hospital. And my other son, who's a little bit older, had a similar diagnosis on the chest wall imbalance. And I took him there too. We decided not to do any treatments for him because he was a little older and it wasn't quite as dramatic, but I've had lots of friends and lots of family that's gone there. And the quality of care is just exceptional. The people really genuinely care about your kids and they think of logical, sustainable treatments that are feasible for a family.

Host: Well, then tell us a little bit about what Davis is like now, from the time that his treatment began to when he completed it. Explain the differences that you noticed or the improvements, and even touch on the psychosocial aspect of going through these types of treatment. What was it like for him? What's he like now?

Dee Dee: Well Davis has more confidences He didn't mind it before, but I think he prefers to have a flatter chest, obviously at the pool when you're a teenager, that's more fun. But I mentioned to you that it was difficult for me to find gear that fit and it protected his chest when he played Lacrosse and he loves Lacrosse. So, it's really comforting to me now that he can wear normal clothes and normal fitness gear and his chest wall will be dramatically more even. You can't even really tell that he's had an imbalance ever. He has really great cross body rotation. It didn't change the pec muscle at all, but it did change the structure. And so while I joked about Davis not being able to do a push up before he can do a push up now. It's not the prettiest pushup, but he's pretty proud of that. And I know it sounds like a little thing to have your chest wall even out, but it is big to me because I don't have to worry anymore about the protection of the heart and the lungs and the evenness. And it isn't necessarily life changing either way. We could have left it, but it is really nice to know that he is got a full coverage there.

Host: Certainly is peace of mind for parents. Gosh, we all know what it feels like when there's anything going on with our children and it can be so scary and you have such a great attitude. As we wrap up, what would like to say to other parents whose children have a similar diagnosis? Do you have any advice for them and please, while you're doing that, tell them anything that really stands out for you about the Portland Shriner's Hospital?

Dee Dee: I would say, while it feels overwhelming, you can find something that works for you and your family. Don't stop at one opinion, if it doesn't feel right. Get another opinion and never be worried about advocating for your child. I think that's right very important. The care at the Portland Shriner's Hospital for Children, was so comprehensive. It was exceptional and it was very simple. As a mom, that's nice. I highly recommend you give them a try. I have high expectations, but I've sent a lot of friends there. I've had friends go to their clinics and I've even recommended another friend with twins for this chest bracing. And she was also so pleased with Dr. Zallen and all the staff. So, if my word means anything, you won't be disappointed.

Host: Thank you so much, Dee Dee for joining us today and for telling us Davis's story and what your family went through. Thank you again, and you can visit us online @portlandshrinershospital.org. Or you can call Portland Shriner's hospital at 503-221-3422. That concludes this episode of Healing Heroes PDX with Shriners Hospitals for Children in Portland. Please remember to subscribe, rate and review this podcast and all the other Shriners Hospitals for Children in Portland's podcasts. I'm Melanie Cole.