A deadly endocrine tumor discovered during a woman’s pregnancy explains years of debilitating symptoms. A complex, six-hour surgery by a Michigan Medicine team kept mom and baby safe.
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When a highly specialized team of University of Michigan doctors arrived in the birthing room, they faced a major undertaking — safely delivering a premature baby while also removing a cantaloupe-size tumor from the mother that put them both at risk.
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Baby Caleb weighed 4½ pounds. The tumor weighed 3½ pounds.
The rare adrenal gland tumor known as a pheochromocytoma had spent years surreptitiously growing to 17 centimeters behind Elizabeth Elder's stomach. The tumor stuck to her kidney and caused Elder continuous suffering.
No one knew that it was the culprit behind excruciating migraines and severe nausea that ruined countless outings and holidays. Or that it was the reason behind sudden, skyrocketing blood pressure, night tremors, profuse sweating, finger tingling and racing heart rates that woke her from her sleep.
Immediately, I could see that all of these experts at U-M were coming together to help and that they truly would do everything they could for me and our baby.Elizabeth Elder
The mysterious symptoms plagued Elder for nearly eight years. At one point, she was diagnosed with depression and anxiety, starting antidepressants and seeing a therapist.
But after the tumor's discovery during Elder's pregnancy this year, a team of U-M physicians and nursing staff from specialties including obstetrics and gynecology, maternal fetal medicine, endocrine surgery, anesthesia and the newborn intensive care unit joined forces to ensure a healthy delivery for Caleb and a safe surgery for his mother.
"I feel really grateful that my baby is safe and that I'm still alive," Elder says. "Knowing what I know now, it's pretty remarkable that something terrible didn't happen."
Silent enemy
Some tumors result in no symptoms. But in cases like Elder's, symptoms can mirror anxiety because of the adrenaline produced by pheochromocytomas, which stem from the adrenal glands and are located in the back of the abdomen above the kidney.
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Meanwhile, Elder's undetected and potentially deadly tumor had continued to grow. When she became pregnant in December 2017, her symptoms worsened, leading to several emergency room visits near her home in Lansing with alarmingly high blood pressure. She was also losing weight.
"It had progressed to daily episodes of sweating, throwing up, excruciating headaches and feeling like my heart was going to beat out of my chest," says Elder, who works in the animal clinic at the College of Veterinary Medicine at Michigan State University. "It used to happen once in a while and last about 20 minutes. But then it was happening every day and lasting hours at a time.
"I started to plan my routes to work based on places I knew I could discreetly pull over when I got sick."
Still, the symptoms didn't raise undue concern among care teams. Nausea, blood pressure spikes and heightened anxiety are not uncommon during pregnancy.
"I just knew something was terribly wrong and that this couldn't be normal," Elder recalls. "But everyone thought I was just experiencing worse anxiety than usual because I was pregnant. So I went to a psychiatrist and was put on the maximum dose of anxiety and depression medication."
Finally, during an episode in the ER 26 weeks into Elder's pregnancy, a close examination of a CT scan done to rule out a blood clot in her lungs and a resulting MRI uncovered the truth: She had a giant mass in her abdomen that was about the same size as the fetus.
Doctors at her local hospital diagnosed her with pheochromocytoma, a disease with an estimated incidence of 2 to 8 per 1 million people.
Elder was transferred to Michigan Medicine, a center known worldwide for its expertise in adrenal tumors and adrenal surgery, including care of patients with pheochromocytoma.
"I was scared but also, for the first time, felt like I was being listened to," she says. "There was some relief in knowing that something tangible was causing this, that it had a name and now it was being addressed. That it wasn't that I was just too weak to handle pregnancy or that it was all in my head.
"Immediately, I could see that all of these experts at U-M were coming together to help and that they truly would do everything they could for me and our baby."
A lifesaving collaboration
Pheochromocytoma can lead to heart attack, stroke and death. Left untreated during a pregnancy, it could cause placental abruption (a separation of the placenta from the wall of the uterus), which has a high mortality rate for both the baby and the mother.
"Most surgeons in the community will not operate on these tumors due to the risk and complexity," says Elder's endocrine surgeon at Michigan Medicine, Barbra Miller, M.D. "Having this in pregnancy is especially dangerous for both the mom and the fetus."
Usually this type of tumor would be removed within several weeks of diagnosis, making sure to carefully control the blood pressure before surgery, Miller says. But because of its size, the types of adrenaline being produced and the pregnancy, the U-M team opted to manage Elder's condition with certain blood pressure medications and close monitoring. They planned to remove the tumor later in pregnancy, allowing the baby to continue developing for as long as possible.
At 35 weeks, an ultrasound showed that the baby was running out of fluid and his heart rate was high. Teams quickly scheduled a Cesarean delivery.
While Elder was under general anesthesia, Caleb was delivered by C-section and immediately taken to the NICU at U-M's C.S. Mott Children's Hospital for monitoring and care. Surgeons then went back to work on the tumor, requiring constant coordination among all teams as Miller removed the large tumor that was lying against the aorta and was beginning to invade the kidney.
The anesthesia team, led by Lauren Anderson, M.D., monitored Elder's blood pressure, which would spike very high and then drop dangerously low because of the adrenaline that fluctuated as the tumor was removed. During the nearly six-hour procedure, teams stopped and started several times to make sure Elder's condition remained stable.
"Many specialists needed to be in the room for this surgery to happen the way it needed to," says Elizabeth Langen, M.D., the high-risk maternal fetal medicine physician at U-M's Von Voigtlander Women's Hospital who delivered Caleb. "This required an experienced endocrine surgeon, high-risk OB team, neonatology team and specialized anesthesia team. All of these surgical teams came together to ensure the best outcome for both mom and baby."
Life after surgery
Because of time spent in the hospital during pregnancy, recovery from surgery and Caleb's three-week NICU stay, Elder had to take nearly five months off work. The tumor may have also been malignant — she will need regular check-ins with her endocrinologist, Tobias Else, M.D., a member of the U-M endocrine oncology program, to make sure it hasn't returned.
But now, she and husband Thom are just enjoying the regular daily life that comes with parenting their hazel-eyed baby with reddish-blond hair and "the best grin." Elder is also thankful that she can take care of Caleb without any of the debilitating symptoms caused by what the family now refers to as Caleb's "evil twin."
"I feel honored that I'm his mom. I live for his smiles," she says.
And even though they are MSU Spartan fans when it comes to sports, Elizabeth and Thom have maize-and-blue shirts and dress Caleb in a "Hail to the Little Victors" onesie.
"So much collaboration was involved in taking care of us, and everyone was so compassionate," Elizabeth Elder says. "Now we have this beautiful, healthy baby and I feel better than I ever have. I'm forever indebted to the incredible care we received."
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Department of Communication at Michigan Medicine
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