Nixon Seagraves is a typical toddler – all boy. It’s something that Emily and her husband, Joby, doubt they’ll ever take for granted – not after all that Nixon has been through.
In the beginning Emily’s pregnancy was normal, then her life changed during a third trimester ultrasound. The ultrasound revealed that the ventricles in Nixon’s brain – the structures that hold spinal fluid – were twice as large as normal for his stage of development.
Only a few causes of severe ventricular hydrocephalus are known – a congenital defect, a sudden hemorrhage, or an infection. Because the enlargement had not been seen on previous ultrasounds, doctors suspected a hemorrhage or an infection.
“That’s not exactly what you anticipate for your life – for your child – so it was really hard to hear that,” Emily said.
Ultimately, what made all the difference was the counsel they received from Christopher Croom, MD, maternal-fetal medicine specialist at Miami Valley Hospital.
“He gave us all the information we needed,” Emily said. “He was realistic, but sympathetic.”
After reviewing test and ultrasound results, Dr. Croom suspected a hemorrhage had caused the ventricle enlargement.
“Since an in-utero hemorrhage is rare, we wanted the experts at Dayton Children’s to come into play, and for our team to engage them in a longer term plan for care that included not only what to do right now, but what to do after birth,” Dr. Croom said.
What started as an initial discussion about Nixon’s condition and outlook evolved into a relationship with the Fetal to Newborn Care Center.
The Fetal to Newborn Care Center Made the Difference
Beyond Dr. Croom’s insight and perspective, Emily and Joby would rely on a team focused on her entire continuum of care at the Fetal to Newborn Care Center. A joint partnership between Miami Valley Hospital and Dayton Children’s Hospital, the center makes navigating the spectrum of care from fetal diagnosis through birth and beyond as seamless as possible and works to put a mother’s mind at ease during a high-risk pregnancy.
Sharon Orozco, the nurse navigator who served as the Seagraves’ primary point of contact, helped the couple understand the multi-pronged approach to Nixon’s care.
“When something doesn’t go as planned in a pregnancy, there’s a lot that needs to be done. There’s a lot of planning, sometimes there’s a lot of decisions, there’s a lot of choices,” Sharon said. “Families often need help truly navigating that whole system, and making sure they understand what each doctor is telling them. Things also can change along the way. They could get better, they could get worse. We are here to intensively help families.”
Laurence Kleiner, MD, pediatric neurosurgeon at Dayton Children’s Hospital, suggested additional tests. Based on the results, the team monitored the situation to make sure that the hemorrhage didn’t worsen, and hoped to deliver Nixon when he was close to term.
“It was good to know that a team was there who could address everything we were dealing with,” Emily said. “Often, you get referred to someone, then someone else, and so on. And that’s the last thing you want to deal with when you have a traumatic event happening. Having a team of people, with one person managing all the questions and information is invaluable.”
‘’By working closely together, we were able to assess what was best for Nixon, both prenatally and postnatally,” Dr. Kleiner said. “It helps us as professionals, and it helps the family.”
Constant Care Eases Worries
The next 10 weeks brought a series of tests and monitoring to ensure that Nixon progressed in ways the doctors wanted. Emily was put on modified bed rest at 35 weeks and could no longer work.
As delivery approached, Emily and Joby braced for the worst. “I was prepared for the NICU, for surgery and for anything else that could happen,” Emily said.
When Nixon was born, he was released to the normal newborn nursery after examination and testing by Miami Valley Hospital’s neonatal team.
Six days later, Dr. Kleiner placed a shunt in Nixon, reducing pressure on his brain. The ventricles remained large, but the shunt helped drain the excess fluid.
“Nixon’s shunt is working exactly how it should,” Emily said, “He’s really defied the odds.”
Today Nixon is developmentally on track and Emily and Joby are beyond thankful for the expert care they received at the Fetal to Newborn Care Center.
“We received phenomenal care there,” Emily said. “They were invested in us and our outcome. Everyone was so happy when they saw Nixon skin-to-skin with me; that he was okay; that we had received the best possible outcome.”
“Having a team that offered the full spectrum of care for both me and the baby made me want to be nowhere else,” Emily added. “I would not trust anyone other than them.”
Nixon Seagraves’ bright future is a tribute to how collaboration between large health care institutions can benefit their communities, Dr. Kleiner said.
“Locally, we want to offer families the best, totally-inclusive care that they can get,” he said.
“Little Nixon has done so well,” Dr. Croom said. “This was a horrible prognosis. This is one of those things that I refer to as a miracle in that he’s kind of defied what the normal expectations are. That’s the wonderful thing about this.”
“He ended up definitely being my miracle,” Emily said, her voice welling with emotion. “He made me a mom.”