Transcription:
A Family's Special Patient Journey

Melanie Cole, MS: There's no handbook for your child's health, but we do have a podcast featuring world-class clinical and research physicians covering everything from your child's allergies to zinc levels. Welcome to Kids Health Cast by Weill Cornell Medicine. I'm Melanie Cole. And we have a patient story for you today. Joining me is Dr. Sherry Huang. She's an Assistant Professor of Clinical Pediatrics at Weill Cornell Medicine and the site Medical Director of the 156 William Street Primary Care location; and Stacy Tsang, she's the parent of Miles and a patient of Weill Cornell Medicine. We have a lot to talk about. Ladies, thank you so much for being with us today. And Stacy, I'd like you to start by telling us your story, why you were treated at Weill Cornell Medicine. Start with your own patient experience, please.

Stacey Tsang: Thank you for having me, Melanie. I appreciate being here and be able to speak on behalf of my story and my son's story. Five or so years ago, I went to an ER, not Weill Cornell for trouble breathing and there I had a CAT scan. They determined there was a mass in my chest. And the experience at this other ER was so terrible between how I found out about the news and who told me, that we left and drove from New Jersey to Weill Cornell, where my husband's family have always been going for decades. So their go-to doctor, Dr. _____, or as we call him Dr. Y fondly, quarterbacked from there and helped navigate us through the different specialists. And ultimately, we determined it was a rare type of cancer and Dr. Port who was recognized as one of the top surgeons in the nation for this performed a successful open chest surgery to remove it.

So after that experience, when we found ourselves struggling to get pregnant, we immediately went to Weill Cornell's Reproductive Center and Dr. Chung was absolutely incredible. He was really patient, thoughtful, thorough. And when I was getting frustrated with the initial lack of progress, because, you know, IVF is not usually, some people are lucky enough to get it first cycle. I was not. And so I was getting very frustrated and he took the time to explain to me what they were doing and you know why they were doing the way they were doing it, and it really put me at ease. So when we were successful, I switched my OB-GYN from somebody outside Weill Cornell to Dr. Waterstone. And again, she was wonderful, especially on the day of delivery. I was extremely nervous with the epidural. And when they were inserting it, she literally let me lean on her. Like she had me hug her more or less while she calmly talked to me through the process. So naturally, when Miles was born and we were selecting a pediatrician, we immediately knew we were going to Weill Cornell. And we live in Jersey, so it's a very deliberate decision to go to somebody farther away that other people might not naturally want to, just to make sure that we have the best doctors and the best experience.

So when Miles was born, there were numerous minor medical issues, I wouldn't even say complications because Dr. Huang and the team were so helpful in informing and guiding us. And so when we had to speak to multiple specialists, Dr. Huang was our new quarterback, communicating with each of the doctors to hear the information straight from them. And then, had a fully informed conversation with us.

Melanie Cole, MS: Wow, Stacey, thank you so much for sharing your story and all that you've been through. It sounds like the specialists at Weill Cornell Medicine really gave you the support that you needed. So then Dr. Huang, what was your role? When did you first meet Stacey and Miles? And how did it happen that you stepped in as their pediatrician?

Dr. Sherry Huang: Sure. Well, first, I'd just like to thank Stacey for sharing your journey and your patient experience. So thank you for telling us about all you've been through. I first met Stacey, Joe and Miles, Joe is Miles' dad, soon after Miles was discharged from the hospital. He was only two days old, and Miles was sent home on a Saturday and I happened to be on call for the Weill Cornell practice that night. And the concern I got was bleeding from the circumcision site, which could be a pretty serious concern. So I reached Joe and we decided to do a video visit. So I could take a better look. And I walked Joe through on how to care for the wound, including the use of gauze. And I just remember him saying, "Oh yes, we have plenty of gauze from the IVF." Now, I know every child is precious, but when I learned that about Miles, I understood that he's just extra special, just because of how much Stacey and Joe went through for him.

So we ended our video call and the next step was for him to have his first newborn visit. It was supposed to be on a Monday, but I ended up actually seeing him again the following day. I was working in the office on Sunday. And so I actually ended up seeing him for the first newborn visit, which was really nice just because we had already met on video. And yes, as Stacey mentioned, Miles had some very common newborn issues. I agree, I wouldn't even call them complications. But they included some feeding problems and jaundice which can be related to feeding issues also. And because in the newborn period, if jaundice gets too high or the baby has poor feeding, this can be dangerous. So I ended up seeing miles several days in a row. And I just remember that there was a fine line between reassuring Stacey and Joe that Miles is very healthy, but also instilling that sense of urgency or vigilance for them to monitor for progression of these common newborn issues and hope that I was clear in our communication about our concerns and expectations. And I really made sure to address Stacey's concerns and challenges especially around breastfeeding.

Melanie Cole, MS: So Dr. Wong, then what happened next? How did your care help miles and the whole family? How did this progress and, how is he now as far as your view, and then I'll get to Stacy and, and what. Thinks.

Dr. Sherry Huang:

Yeah, sure. So he is a happy, happy, healthy almost toddler. He's I think 15 months, 18 months. But at around two weeks of age on his exam, we found a possible hernia. So our office actually worked really hard to get them the same-day ultrasound, just because we know that they don't live close by and we didn't want them to have to travel back and forth. The results of the ultrasound were a little bit unclear to me. So, because I knew that hernias do need to be corrected relatively urgently, some of them, I advised Stacey and Joe to see both the urologist and then the pediatric surgeon for their opinions. I thought it was just best for the parents to have all the information before making a decision for surgery, which Miles actually ended up having. And right before he was supposed to have surgery, he had an ultrasound of a spine for a dimple on the spine, which was found by the urology team. So the spine ended up being normal, but there was an incidental finding of possible hydronephrosis, which is a condition where the part of the kidneys and tubes are swollen. So I really worked hard with the inpatient team and with the urology team to then advocate for him to get a kidney ultrasound, you know, just to work everything up before they left the hospital. And again, I just didn't want him at this young age, right after surgery to have to travel back and forth. And then as Miles has gotten older, we've had to navigate with Stacey and Joe several waves of COVID. He was born during the pandemic. So there were several waves in the community, but by communicating and doing shared decision-making, we've managed to keep his parents and Miles very healthy.

Melanie Cole, MS: Wow, Stacey, you've just really had quite the experience. Tell us about your experience with Weill Cornell, how they helped you navigate all of this. I don't know that any of us could have held it together with everything that you went through for yourself and Miles and your husband, Joe. What in particular stood out about the care that you received? What was the staff like? Tell us about your experience.

Stacey Tsang: I would say what stood out was the patients, the thoughtfulness, and the time that Dr. Huang and all the other Weill Cornell doctors take to explain everything until we're a hundred percent comfortable. You know, we really appreciate Dr. Huang coming out in the gate, like "Get a second opinion. Talk to the pediatric surgeon to get that view as well. This is surgery. He might be going under, so this is not something to just take lightly," and so we really appreciate her proactively giving us that advice. Sometimes we wonder if we're going to offend a doctor by telling them like, "Hey, we want to talk to somebody else," and she was very supportive and encouraged that from the get go, which we really appreciated. I would say, overall, the thoughtfulness is really important, but also that they truly care about us as, as patients, but also as parents and as support networks for whoever is going through care. And I have to mention that the facilities are really incredible. Just everything is brand new and state of the art. So you really just feel like you're getting the best care all around.

Melanie Cole, MS: Stacey, what would you like to tell Dr. Huang while you're on this podcast with her and any of the other staff, you've mentioned a few names. But speak to Dr. Huang and what you would like her to know about how she took care of you and Miles and Joe?

Stacey Tsang: Yeah, I would just want to say thank you. Miles is amazing. He's the happiest, smiliest baby. He laughs all the time. He can teach everyone, you know, a thing or two about finding joy in the tiniest things. And we're able to do that comfortably and knowing that he's healthy, thanks to you. And thank you for caring for Miles as if he were your own. You know, as a parent, you always want to make sure you're considering everything, all the factors, all the results, all the data, all the possibilities to make sure you're making the right decision with your child's care. And with you, Dr. Huang and Weill Cornell, we're at ease knowing that we are doing just that. So thank you very much.

Melanie Cole, MS: Now, I'm choked up. That was lovely.

Dr. Sherry Huang: Me too.

Melanie Cole, MS: That's just wonderful. And, Dr. Huang, last word to you, what would you like to tell people listening to this patient's story who want to be able to trust their doctors? I mean, Stacey's story is incredible but other people aren't sure. And they want to be involved in that shared decision-making, which obviously Stacey was, and it was very deliberate that she ended up at Weill Cornell Medicine. What would you like to tell other patients and families that are considering the same?

Dr. Sherry Huang: I would say that we really only have your child and your family's best interest and health in mind, and we are happy to work with you as partners to make sure that your children are healthy. And I would also add, please do not be afraid to ask us any questions, especially if our views or decisions are different from yours. We don't necessarily explain everything. So please do not be afraid to ask. You won't offend us. And additionally, we don't always know the answer, but we will always find out from the top specialists, the most updated guidance for your concerns.

Melanie Cole, MS: Thank you both so much for joining us and sharing this patient's story today. Stacey, thank you for joining us. And I hope that you tell Miles that we said hello and give him a little squeeze for me. I just love little toddlers. And Dr. Huang, thank you as always for all that you do. And for joining us on this podcast. And Weill Cornell Medicine continues to see our patients in person, as well as through video visits. And you can be confident of the safety of your appointments at Weill Cornell Medicine. That concludes today's episode of Kids Health Cast. We'd like to invite our audience to download, subscribe, rate, and review Kids Health Cast on Apple Podcast, Spotify and Google Podcast. For more health tips, go to weillcornell.org and search podcasts. And don't forget to check out all the great podcasts on Back To Health. I'm Melanie Cole.

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