Seeing Phoenix

spina bifidaIt seems like people have been looking at our son Phoenix — without seeing him, without talking to him — since before he was born.

When I was pregnant and the ultrasound showed severe spina bifida and kyphosis (an excessive forward curve in his spine), the specialist told us he had never seen a spine like Phoenix’s. He wasn’t sure how it could be treated and recommended terminating my pregnancy.

My husband Mike and I chose not to.

Phoenix was born on June 29, 2009, with a lesion at the base of his spine. His spinal cord and nerves were exposed, so his first surgery was a skin graft to cover the lesion. On top of spina bifida and kyphosis, our son was diagnosed with clubfoot and hydrocephalus.

It felt like Phoenix was a patient before he was baby. He had 16 specialists — an orthopedic surgeon, neurosurgeon, ophthalmologist, physical therapist and more.

Phoenix’s appointments gobbled up 40 hours a week. One doctor would remind me to stretch his legs with every appointment change; another to patch his eye.

He didn’t get to be baby, and the back and forth among all of Phoenix’s specialists left me feeling insecure and unsettled as a mother. Was I doing anything right?

Doctor after doctor talked at me. Every visit was a constant checklist.

My husband Mike and I knew Phoenix’s condition was complex. When we brought him to an appointment, specialists would call their colleagues to show them something they had never seen before. The lesion at the base of his back was quite large, his kyphosis was rare and extreme at 67 degrees, his skin graft lasted longer than most.

All we wanted was to do our best for Phoenix. We knew he needed multiple surgeries. Because of Phoenix’s kyphosis, his lungs started collapsing when he was 2. Phoenix’s spinal curve needed to be reduced, which would improve his lung capacity. His orthopedic surgeon recommended removing three vertebrae.

That didn’t seem like an option for us. Phoenix would stop growing if we agreed to that surgery.

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The Reuwer family – Rowan, Genevieve, Megan, Penelope, Mike and Phoenix

I started researching second opinions and decided we would get one at Boston Children’s Hospital. It would mean traveling across country from our home in Wisconsin to Boston.

We started corresponding with Rebecca Sherlock, a nurse practitioner and coordinator in the Spina Bifida Clinic, but had to postpone our trip until Phoenix was 5.

We expected to come to Boston Children’s and have an expert confirm what we had heard before: Phoenix would need to have his vertebrae removed. We expected it to be like every other visit to a medical specialist.

But Boston Children’s was different.

When we walked in the door of the Spina Bifida Clinic in November 2014, Rebecca walked out to greet us. “We’ve been waiting for you,” she told. We had never heard that before.

Rebecca escorted Mike, Phoenix and me to the first of seven appointments that day — Dr. Warf, a neurosurgeon.

After greeting Phoenix, Dr. Warf looked me in the eye. “I’m so sorry for your loss,” he said (referring to our first child Evan, who was stillborn). No doctor had ever said that to me.

We cried. Dr. Warf’s level of compassion was so uniquely different from anything we had ever experienced.

More appointments followed — a cardiologist, urologist, orthopedic surgeon, plastic surgeon, complex care physician.

Every appointment at Boston Children’s was about Phoenix. Dr. Karlin, an orthopedic surgeon, looked at him and talked to him, asking him, “Phoenix, are you OK? Phoenix, how do you feel?”

For the first time, taking care of Phoenix was not a checklist or hurdle after hurdle after hurdle. Doctors saw Phoenix the boy. They took care of him and of us.

“We’ll sort out your insurance,” we were told. We didn’t understand. Handling insurance paperwork with new providers or as we crossed state lines for the best care for our son had been our job — one of our jobs.

We met with Dr. Hobbs, a complex care specialist, for 90 minutes. She asked for Phoenix’s story and explained her job: to make sure all of Phoenix’s doctors talk to each other. Mike and I didn’t need to do that.

Dr. Hobbs looked at Phoenix as a whole child and at his developmental issues and made recommendations to better Phoenix’s quality of life. One of her first suggestions was to refer Phoenix to a pulmonologist; he had never seen one. We found out he had restrictive lung disease.

With a specialist handling communication and additional help with paperwork, we could focus on being Phoenix’s mom and dad. It’s what we wanted.

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And though we expected Dr. Karlin to recommend removing Phoenix’s vertebrae, he didn’t. He had three suggestions to help Phoenix.

  1. He could implant rods to straighten his spine.
  2. He could work with a plastic surgeon to grow new skin to cover his lesion and then segment his vertebrae.
  3. When Phoenix reached adolescence and was closer to adult height, he could remove the three vertebrae.

We were impressed. We had three options — not one. And Dr. Karlin offered to consult with several of his specialist colleagues at other children’s hospitals to review the plan for Phoenix’s care and make sure he had considered all options.

In August 2014, we went ahead with the growing rods. Unfortunately, Phoenix had a severe skin breakdown, which put him at risk for infection, and Dr. Karlin had to remove the rods six weeks later.

We spent a year planning for Phoenix’s next surgeries — first a plastic surgery to expand his skin and then vertebrae segmentation, wedging his vertebrae to fit together better and allowing us to postpone removing the vertebrae until adolescence. After the first part of this two-part process in September, we are cautiously optimistic.

Mike and I know Phoenix has more surgeries ahead of him, and we know we have found the right place to see and care for our son. We’re so happy that Phoenix is seen at Boston Children’s.

Learn more about the Boston Children’s Spina Bifida Center.