Danielle Goldsmith is happy to be able to sit up in a chair and still be able to breathe without having her heart pounding in her chest.
Having just turned 27 years old on Nov. 12, the Farmington native has a new lease on life after undergoing a new form of surgery several weeks ago in Arizona. For this she credits her Farmington family and friends, as well as the many prayers that have been lifted up on her behalf over the past three months when at times Goldsmith feared she had no hope.
“I love Farmington!” Goldsmith said. “I love the community and I think it’s a great place to live.”
As a sure sign of support for Goldsmith, Jymie Lilley and Janna Hagerty are putting on a chili dinner fundraiser, along with a silent auction, at 6 p.m. Friday at the Memorial United Methodist Church in Farmington. The event costs $6 per person, with additional donations accepted. Not only are those attending the fundraiser going to enjoy a wide selection of chili recipes, but they’re going to hear from Goldsmith herself how she nearly died recently from a disease she’s had her entire life — pectus excavatum.
“It is actually a chest deformity where your chest bone caves in like a bowl,” she said. “Half of the people I talk to have never heard of it. Even more than 50 percent of the medical professionals I’ve spoken with have never heard of it. Most have never seen it, but one in 400 people have it. A lot of times you don’t know people have it because they’re embarrassed by it, so they don’t show their chest, but you probably know someone who has it.”
David and Cheri Goldsmith’s daughter, one of three children, was born with the disease.
“When I was 12, doctors told me that I had a moderate case of pectus excavatum, so they followed it over the years,” she said. “They gave us the option of having the surgery at the time, but my parents and I decided not to because I wasn’t symptomatic. It wasn’t causing me any issues besides the physical appearance, so it would have been just for cosmetic reasons.
“In high school, I couldn’t run a mile and it was due to pectus, obviously. Doctors had diagnosed me with asthma and said I had that going on as well, but it was due very much to pectus. They had told me at the time I was 12 that I had 75 percent of heart and lung capacity of what the normal person has, so I knew it would be more challenging for me, but I made it my goal to run.
“I have also danced my whole life. I danced for a studio in Farmington, I danced for Knightline in high school. I cheered in college and then I was a professional St. Louis Rams cheerleader when the Rams were in town. So, dance was my life. I’ve always danced. Then, as I said, I made it my goal to run. I had a woman by the name of Susan Savage help me learn how to run in high school and then I continued running in college. I even got up to running five to six miles a day up until three months ago.”
That’s when Goldsmith said, “everything kind of happened” and her life was turned upside-down in only a matter of seconds.
“I was riding in a car with friends going to dinner in Colorado,” she said. “All of a sudden, I couldn’t breathe. I couldn’t see or hear. My heart started pounding in my chest really fast and I felt like I was having a heart attack. I actually thought I was dying because of how severe it was and how much I couldn’t breathe.
“We called an ambulance and they met us at a gas station. All I remember is that the paramedics kept saying, ‘Danielle, your heart rate is really high. Danielle, your oxygen is really low. You have to get your heart rate down and your oxygen up.’ They kept screaming at me, ‘Danielle, stay with me! Stay with me!’ They truly thought I was dying. It was the scariest experience of my life.”
At the time, Goldsmith told the doctors and paramedics that she had pectus excavatum, but they all seemed to disregard it as a source of the problem.
“They just put it on the back burner,” she said. “So, when they took me to the ER, they threw me into a psych room, made my boyfriend leave the room, took my phone and had me lay there for three hours. They then diagnosed me with anxiety and told me I was just having a panic attack. I went home still in severe pain — my chest hurt so bad.
“The next few days I couldn’t walk because of shortness of breath. I could barely do anything and keep my oxygen up. We went to Missouri Baptist ER where they admitted me. They knew something was wrong with me, but they didn’t know what. When I got to Missouri Baptist, my oxygen level was at 84 percent. Normal oxygen is 95 to 100. The ER doctor wasn’t about to let me go home. He was great.”
Goldsmith spent an entire week at Missouri Baptist where she was kept busy as the doctors ran every test under the sun.
“I truly believe they tried their hardest to figure out what was wrong with me, but they couldn’t,” she said. “Every doctor I spoke to — a cardiologist, pulmonologist, the hospitalist — had heard of pectus excavatum from their textbooks, but they’d never seen a case of it.”
They didn’t know how to treat whatever was causing Goldsmith’s agony.
“We measured my Haller Index while we were in the hospital,” she said. “The Haller Index is what tells you how severe your pectus deformity is. A normal Haller Index is a 2.0. Recommended surgery is a 3.2. My Haller Index was a 4.95. Missouri Baptist determined that. They knew that I had a very high Haller Index, but they didn’t have enough knowledge and experience with pectus to know what to do with me.”
The doctors told Goldsmith they’d exhausted all efforts in trying to find a cause for her medical problem and were sending her home attached to an oxygen tank.
“They told me a lot of people live off of oxygen and that I’d be fine,” she said. “It was hard for me to swallow that because at the time I was 26 years old. I had been running five miles a day just three months ago and they said, ‘You can just live off oxygen for the rest of your life.’
“So, I came home and a cardiologist at Parkland in Farmington that also works for Washington University, Barnes and BJC, saw me one day and said, ‘You’re in terrible shape. We have to admit you to Barnes Hospital.’”
By this point Goldsmith’s father was having to carry her upstairs with an oxygen tank because she was no longer able to walk on her own. After being admitted to Barnes, she spent nine days as an in-patient.
“They did an echocardiogram,” Goldsmith said. “All echocardiograms are done laying down, but my symptoms were very positional. I was only symptomatic when I was sitting up or standing up or walking. If I was laying down flat, I was fine. My oxygen was fine. My heart rate was fine.
“It was only when I was up and moving that I was symptomatic, so one of the cardiologists said, ‘Let’s do a standing echocardiogram.’ It was interesting. I had four doctors in the room and two students. Laying down I was a normal person and had a normal echocardiogram, but as soon as I stood up, they could see that my right ventricle got pinched off and I would lose 60 percent of blood flow. Only when I stood up did I have a hole in my heart with the de-oxygenated blood flowing the wrong way.
“I felt like a science experiment in the room. It was crazy. They had never done a standing echo. This is Barnes Jewish we’re talking about. I mean, they were amazed! Literally, all the doctors were pointing at the screen saying, ‘Did you see this? Did you see that?’ It was very cool because we’d been through so much the last couple of months, but now we had answers. It was a really cool day.”
While they didn’t offer Goldsmith many details, the doctors told her the test had provided them with some of the answers they needed. Soon after, they determined it was the pectus excavatum that had been causing her symptoms. Unfortunately, there wasn’t a surgeon at Barnes who was trained in performing the less invasive and most modern surgery available to fix the problem.
“I had one surgeon come in — the only surgeon at Barnes who does any kind of pectus surgery — and he wanted to do an ‘old school’ procedure on me where they cut you open from top to bottom, breaking your chest bone. They pull it up and then rewire it and cut out a portion of your ribs. It was one of the scariest days of my life. I had lost all hope that I would get it fixed because I had my heart set on getting what is called the Nuss procedure done. It’s a less invasive surgery.
“Tears flowed that day. It was a very emotional, very sad day. There are four top specialists in the world that do the Nuss procedure for pectus excavatum in adults. There’s a lot that do it in children. There are only four specialists that do it in adults, and it’s very hard to get on their list.”
That’s when Goldsmith said an “all-call medical campaign’ went out to find Dr. Dawn Jaroszewski.
“She is the top surgeon in the world and Farmington rallied together,” Goldsmith said. “It was really insane to see. It was the coolest thing ever. My support team from Farmington was wild. We had over 1,000 shares of trying to get in touch with Dr. Jaroszewski. People from Farmington and all over were trying to get in touch with her and share this post. Ironically, two days later, Dr. Jaroszewski called my doctors at Barnes and we got on the wait list.
“Then I got on the cancellation list and got moved up a month early. I had my surgery on Nov. 15 — my parents’ wedding anniversary — at the Mayo Clinic in Phoenix. What she did was drill a small hole in the middle of my sternum and put a crane in. She pulled my chest up with the crane and then slid two stainless steel rods in to hold my chest in place like braces for teeth. I’ll keep the bars in for three years and then I’ll get them removed and my chest will be in place.”
Miraculously, the surgery didn’t affect Goldsmith’s heart or lungs as had been feared. In fact, Dr. Jaroszewski told her young patient that she had the best recovery she’d ever seen.
“The doctor said, ‘You’re amazing! You’re doing fantastic!’” Goldsmith said. “I think it was just the power of prayer and the community really rallying together for me did a lot. Outside of my personal story, I shared my experience on Facebook, I’ve had so many people reach out to me that their child has pectus excavatum or they themselves have it or they think they have a friend who has it. Who can they talk to?”
According to Goldsmith, a lot of people who have pectus excavatum don’t want to show their chests because they’re embarrassed by it — especially men — because the disease is actually more common in males than females.
“A lot of guys who have it don’t go swimming because they don’t want to show their chests,” she said. “Many people have mental issues because of it. It’s really cool that I’ve been able to help a lot of people in the community — even one girl I graduated with who reached out to me and said, ‘Doctors have misdiagnosed me with asthma because many medical professionals don’t know enough about pectus excavatum.’
“That’s the same thing that happened to me and now I can help others get the help they really need by sharing my story.”
Kevin Jenkins is a reporter for the Daily Journal and can be reached at 573-518-3614 or firstname.lastname@example.org
“All of a sudden, I couldn’t breathe. I couldn’t see or hear. My heart started pounding in my chest really fast and I felt like I was having a heart attack." — Danielle Goldsmith