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I gave birth to my daughter in Japan. My husband and I loved living there, but she needed better healthcare, so I moved back to the US.

Katie Spence   

I gave birth to my daughter in Japan. My husband and I loved living there, but she needed better healthcare, so I moved back to the US.
  • My family and I moved to Japan when I was pregnant with my daughter Stella.
  • After she was born, we learned she had spina bifida. It was hard to find good healthcare for her.

In October 2020, when I was seven months pregnant with my third child, my family moved to Japan for my husband's job. Although we didn't know many people in our new city and spoke no Japanese, this wasn't my first reproductive rodeo. I was sure my obsessive planning meant everything would go smoothly; plus, all of the pre-natal screenings were healthy, and I had taken all of my prenatal vitamins.

I felt excited and confident, and as I gave birth, the OB-GYN was calm and careful as he applied pressure on the top of my swollen belly and pulled my daughter free. I held my breath, waiting to hear Stella cry. And there it was, faint but present. I looked up at the anesthesiologist and smiled through my facemask.

In the recovery room, we learned our daughter was in the NICU. We were in shock, unable to process what we were being told. Over the next five weeks, Stella was intubated, and she received blood transfusions and platelet infusions.

We learned that Stella has spina bifida

She couldn't lie on her back and had to be fed through a tube. After eight days, she was stable enough for an MRI, which led to a diagnosis: spina bifida, a congenital neural tube defect that occurs in the first few weeks after conception. Following a seven-hour surgery on her spinal cord, we were reassured she was going to live a "normal" life. This optimism unraveled over the next 12 months.

The Centers for Disease Control and Prevention estimates that in the United States, just over 1,400 babies are born with spina bifida every year. The type my daughter has is even less common, with an occurrence between only three and six per 100,000 births. Roughly 90% of cases are diagnosed in utero, resulting in up to 97% of these pregnancies ending in termination.

Stella weighed less than her baby cohort, often not even making it on the growth charts. She couldn't sit up, struggling to get on all fours. Her crawling was delayed. Her feet were turned in, and her left leg was noticeably smaller. More concerning, she had no bladder or bowel function. The doctors we saw weren't well-versed in her condition, and we couldn't find specialists. Through an incredible support group on Facebook, I learned more about the realities of her condition.

It was hard for us to find the care she needed in Japan

The Japanese healthcare system is great for most kids and is free until the age of 18, but in my experience, medical and social services were limited in dealing with Stella's complex condition. We couldn't find a day care equipped to handle her needs. We were told by the city office that when she turned 5, the city would consider giving her a place at a special-education facility, even though Stella is cognitively typical.

I inquired about physical therapy and mobility aids but was told they weren't necessary for Stella, without explanation. When it came time to order monthly medical supplies, I navigated Japanese websites to find the correct brand, size, and amount. I felt like my questions about her future weren't adequately addressed in our bimonthly spina bifida appointments, partially due to the language barrier and cultural differences. I felt hopeless and frustrated, and constantly questioned myself.

I moved back to Texas with the kids

At the end of 2021, we made the difficult decision that I would move back to our hometown of Houston, Texas with the kids, while my husband would stay in Tokyo for work and visit every few months. We had loved living in Tokyo together — my sons were in an amazing Montessori, I had formed a small but supportive group of friends, and Tokyo is such a vibrant, exciting place. Leaving and living without my husband full-time would be difficult, but getting Stella comprehensive care took precedence.

The Texas Medical Center is a world-class medical destination, and we quickly had an appointment with a top pediatric neurosurgeon. He looked at the fuzzy MRIs from Tokyo and said she needed urgent spinal cord surgery as her spinal cord was still tethered to a mass of fat cells called a lipoma.

He also referred us to an orthopedic surgeon who ordered intensive physical therapy, ankle-foot-orthoses (with a pink leopard print pattern), and a wheelchair (hot pink, of course). A local Montessori school accepted all three of my children, and Stella qualified for early childhood intervention.

Moreover, the hospital that she spent so much time in had a playroom for her brothers and physician's assistants. They even advocated for my mental health during those weekslong hospital stays. Medical supplies were sent directly to our house and an expo for mobility equipment was held mere miles from our house.

While the US healthcare system has flaws, the specialty care we received was phenomenal. Stella's team prioritizes her comfort, future, and happiness, as well as keeping her healthy. Now, at just three years old, Stella has had five surgeries, hundreds of hours of physical therapy, and countless doctor visits to help her so that she can thrive in pre-school, dance with her brothers, and push her wheelchair through Target. As her mother, nothing will stop me from giving her a shot at a typical, even boring, life, and I'm glad I made the decision to come back to the US so we could do that for her.

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