Mason’s story: A newborn with a peach-sized tumor

momandmasonWhen Tara Johnson found out— after 10 years of trying to get pregnant—she was carrying boy-girl twins, she was thrilled. “It was so exciting, it felt like a double blessing,” she remembers.

The pregnancy progressed normally until her 21-week checkup when everything changed. Doctors found a large growth on the neck of her unborn son.

Tara’s care was transferred to Brigham and Women’s Hospital, and doctors from Endocrinology and Otolaryngology at Boston Children’s Hospital formed a team to manage her son’s care.

When she was 31 weeks pregnant, Tara and husband Bruce were in Boston to meet with Boston Children’s Associate Otolaryngologist-in-Chief Dr. Reza Rahbar for the first time, when she unexpectedly went into labor. Doctors were able to stop the labor, and Tara was put on bed rest at Brigham and Women’s. “I was really at the right place at the right time,” she says.

The ensuing weeks were filled with a lot of waiting and anxiety, two MRIs, many ultrasounds and multiple meetings with Dr. Rahbar to plan for the twins’ birth and the inevitable surgery to remove her son’s ever-increasing growth. Dr. Rahbar was certain the tumor was a benign teratoma, but couldn’t determine exactly the severity until the baby was born. Bruce remembers, “I worried a lot about whether Mason would make it through all of his medical issues, and at the same time I also worried about the long-term complications if he did survive.”

Bed rest and then delivery

The twins held out until 36 weeks. On February 5, 2013, Tara went into labor and was prepped for delivery. “The last thing Dr. Rahbar said to me before I was given anesthesia was, ‘I don’t want to scare you, but there is the possibility that he won’t make it.’ I looked at him and I told him, ‘I know you have to tell me that, but I don’t think that’s going to happen.’ I knew in my heart he wasn’t going to let that happen, and he didn’t.”

Mason before surgeryTara and Bruce’s daughter Olivia was born without fanfare. Then came Mason via a special delivery that allowed surgeons to insert a breathing tube before cutting the umbilical cord. “When I saw Mason, it was the strangest thing because I didn’t really cry,” says Tara. “I think I was telling myself not get too attached because you never know what will happen.”

Tara and Olivia were discharged three days later and were able to return to their home near Springfield, Mass. Mason was transferred to Boston Children’s Neonatal Intensive Care Unit (NICU) while his care team planned the surgery to remove the teratoma.

Removing the tumor

On February 14, 2013, Dr. Rahbar operated on Mason to remove the peach-sized tumor. Tara and Bruce were told they would see Dr. Rahbar and surgeon Dr. C. Jason Smithers at the end of the six-hour surgery and would be updated throughout the operation.

“When Dr. Rahbar came out of the operating room after only 2 hours,” Tara says, “I freaked out. It turned out to be good news. He said, ‘We’re done. As soon as we did the incision, it came out with no complications. It just kind of fell out.” At that point, Tara did let herself cry, “It was after his surgery when I completely fell apart. He’s my son, and I love him so much. And he’s still here.”

Tara, Bruce and Olivia were able to stay nearby in Hospitality Homes while Mason recovered at the hospital. “Even though I saw him every day, Mason’s team would call me if something came up while I was away.” On March 1, Mason was transferred to a local NICU closer to the family’s home, where he spent another 18 days. He went home on March 19, 2013.

Mason now – “a huge ball of energy”

Surgery was not the end of Mason’s medical journey. The tumor was uniquely positioned to damage his left thyroid gland and as a result, Mason has an underactive thyroid or hypothyroidism. It also paralyzed his left vocal chord and caused laryngomalacia—a weakening of his airway that causes noisy breathing.

Two and a half years post-surgery, Mason is progressing with speech therapy. He takes medication for his hypothyroidism, but is doing so well that doctors will try to wean him off it in a few months. Dr. Rahbar is still monitoring his vocal cord paralysis and laryngomalacia—which have not improved—and will discuss surgery options with the family if the situation hasn’t changed within a year.

Mason ball of energy“Mason is very physical. He was walking at 9.5 months and has been going, going, going ever since. I think everything he has gone through gave him a Superman ego. Olivia’s a little more laid back. She’ll sit by herself for an hour just coloring or reading a book.” Bruce adds, “Mason’s progress has been remarkable and life-changing for both Mason and for our entire family.”

On July 17, Tara and Bruce welcomed another baby into their family, so their hands are full chasing after the twins and caring for a newborn. “It’s been a bit crazy lately,” says Tara. “If I had half the energy Mason has when he wakes up in the morning, I’d be all set. He’s just a big, huge ball of energy.”

Tara and Bruce are comfortable with the wait-and-see approach to Mason’s care. “Dr. Rahbar is very straight and to the point and will tell you how it is. I never feel like there are surprises.” Bruce adds, “Dr. Rahbar legitimately cares. You can tell this is his passion. We are forever in debt to him and the team that looked over and cared for our son.”

Learn more about Otolaryngology at Boston Children’s Hospital.