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Jolene: Facing a Lifetime of Challenges

When Roberta Miller’s 7-year-old daughter, Jolene Green, required surgery to remove a tumor compressing her airway, she knew St. Louis Children’s Hospital was where her daughter needed to be. But the family lives six hours away in Kansas, and although they were used to traveling to the hospital on a regular basis, the thought of being far away from family during a hospital stay weighed on the mom of two children.

“We went to another hospital closer to home because we thought it might be easier on everyone in our family, but they did not feel comfortable about doing the surgery,” Miller recalls. “I was happy to have the surgery done at Children’s because I know I am taking Jolene to the best of the best.”

Diagnosed with Neurofibromatosis Type 1 (NF1) at age 2, Jolene faces a lifetime of health challenges, says her mom, who also has NF1 along with her 10-year-old son, John. Fortunately, Miller and John have not had to face the difficulties Jolene has experienced. The primary concern for Jolene has been the growth of benign tumors that have affected multiple nerves in her body.

“Jolene and John have been seeing the same specialists at St. Louis Children’s Hospital for several years now,” Miller says. She first discovered David Gutmann, MD, PhD, the Donald O. Schnuck Family Professor in Neurology, and Director of the Washington University NF Center, during an Internet search. Jolene and her brother are patients of Dr. Gutmann and the NF multidisciplinary team at St. Louis Children's Hospital, where they are able to receive care and therapies in a variety of areas, including ophthalmology, cardiology, oncology, neurosurgery, orthopedics, endocrinology and genetics.

For the last two years, Miller has been bringing Jolene to St. Louis Children’s Hospital every four months. It was during the past year, when Jolene was experiencing recurrent pneumonia, difficulty breathing and choking on her food, that Jolene became a patient of St. Louis Children’s Hospital cardiothoracic surgeon Pirooz Eghtesady, MD, PhD. Dr. Eghtesady is the Director of Pediatric Cardiothoracic Surgery at Washington University in St. Louis and Co-Director of the Heart Center at St. Louis Children’s Hospital.

Dr. Eghtesady, along with colleagues Varun Puri, MD, a member of the Barnes-Jewish Hospital cardiothoracic surgery team, and Albert Woo, MD, St. Louis Children’s Hospital plastic and reconstructive surgeon, performed a very extensive surgery on Jolene to resect a large tumor that involved her upper chest and trachea, great vessels and nerves to her arm and diaphragm.

“This mass was causing compression on her airway, and we knew that, working collaboratively, we could remove the tumor and reduce her symptoms,” Dr. Eghtesady explains.

During what turned out to be a nearly 10-hour procedure, Dr. Eghtesady and Dr. Puri removed the vast majority of the tumor from the deep recesses of Jolene’s right chest. In the process, they had to “peel” the tumor away from some critical structures such as the nerve that controls the function of the right diaphragm, the nerves that supply the vocal cords, the blood vessels that supply the right arm and the trachea, the main breathing channel that allows passage of air from the nose and mouth to the lungs, and lastly, the spinal column and the nerves arising from that area. Finally, Dr. Woo joined the team to help identify and preserve the nerves supplying the right arm known as the brachial plexus.

“Dr. Puri has really become an integrated part of our team, and he brings with him the world-renowned experience and history of the Washington University thoracic surgical program,” Dr. Eghtesady says. “We are blessed to be able to benefit from such rich history and expertise, which translates into kids like Jolene getting unparalleled care.”

It’s the collaboration of surgeons and the expertise of specialists from across the hospital that has made St. Louis Children’s Hospital the best choice for Miller and her children.

“I like the fact that at Children’s they always seem to be on the cutting edge of technology,” she says. “We were so grateful that the surgery was a success for Jolene compared to what might have been permanent nerve damage.”

Although the surgery was long and nerve-wracking for Miller, she appreciated the way the hospital put Jolene at ease. “We really loved that Child Life Services helped ease her anxiety by having her make her own mask, giving her a princess crown and a wand to wave goodbye with,” Miller recalls. “She was actually excited to go back to surgery, and it made it a lot better for all of us.”

It’s those moments that help ease her worries knowing that Jolene will be back for additional surgeries, including a Shilla Procedure for her spine and the possible removal of a tumor

“This is a lifelong condition that she will have to deal with, and so it is nice to know that Jolene has the doctors and nurses who are always there for her,” she says. “Everyone really works together to make sure we have appointments on the same day and make it as easy as possible for our family. To me it’s worth the six-hour trip to know I’m getting the best I can for my kids.”

 

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