Hubbards stay strong as baby fights spina bifida
By Sandy Bond
Anika Joe Hubbard was born Feb. 4 with a full suite of surgical team members in attendance. At seven pounds 13 ounces and 22.5 inches long with a full fringe of dark brunette locks like her mom and dad, Kassandra and Will, she was an absolutely angelic child to behold with an enchanting smile and a tenacious spirit.
“She’s definitely a fighter,” Kassandra said.
Although her arrival had been meticulously planned for months, Anika took matters into her own tiny hands and decided to arrive a day prior to the scheduled C-section, sending the staff scurrying. Anika has the distinction of being the first child born in the newly-completed maternity wing of Abbott Hospital in Minneapolis.
Anika means, “grace” and she has been the epitome of grace under fire.
A routine ultrasound at 36 weeks revealed a shadow at the base of Anika’s spine. As she continued to grow within the womb, concerns about her health outside the womb began to grow. The daunting diagnosis: spina bifida. For some inexplicable reason, extremely early in the pregnancy the two sides of the embryo’s spine fail to close together.
“While the rest of the embryo is grow…grow…growing,” Kassandra said, “the spine does not.”
In most cases, the cause is not totally understood. Some believe that folic acid, a B vitamin available in prenatal vitamins, may help prevent it. In the preparation for starting a family, Kassandra had been taking prenatal vitamins for nearly two years before Anika was conceived. Further studies indicated no family history.
More common than most people think, Kassandra said, the odds are one in every 2,000 births. The reason we don’t hear about the condition more often is that there are several degrees of severity of the condition: from one, so subtle it is often missed, to three, a cause of more profound challenges. Anika measured three. With a small sac or tumor identified during an ultrasound and attached to the base of her spine, the Hubbards were immediately referred to Dr. Mahmoud Nagib, who specializes in pediatric neurosurgery and spinal tumors at Abbott Hospital.
“He is absolutely fantastic,” Kassandra, said. “Very positive, caring, and supportive.”
It was very important that the sac not rupture during the trauma of delivery, Kassandra said, because Anika might develop spinal meningitis. That’s why a C-section was scheduled, she said. Yet with all their precautions, it did rupture.
Almost immediately after she was born, Anika was scheduled for the first of several surgeries to follow.
The first surgery was to repair the spine, and the second, to install a VP shunt to relieve any buildup of spinal fluid to the brain.
Since the spinal fluid flows up and down the spine and the spine had not formed completely, there was an obvious reason that a problem would occur with the flow.
There is extra tubing nestled in her tiny body from the shunt; it will never have to be adjusted or replaced as she grows, Kassandra said.
Kassandra was able to stay bedside with Anika for the first three weeks until Anika was released from the hospital.
Unique to the syndrome is a condition called clubfoot where the ankle and foot can be nearly reversed and the knees hyperextended. Dr. Geoffrey Haft, a pediatric orthopedic surgeon of Sioux Falls, applied therapeutic soft leg casts up to Anika’s hips, which slowly turned the ankle and foot to the right position. Free from the casts, Anika now wears braces on her feet 16 hours a day. In the interim, therapy done by mom and dad and physical therapists from the state program, Birth through Age 3, help with muscle tone.
At first the prognosis was not altogether positive.
Physicians were guarded in saying whether they thought Anika would ever have any feeling or movement below the base of her spine.
“Being in casts up to her hips, there was little way of knowing,” Kassandra said. “It’s been a journey.”
The miles traveled are being chronicled by mom. One day Anika will read of her triumphs over adversity.
“I read a quote once that often comes to mind,” Kassandra said, “You never know how strong you are until strong is all you have left.”
Members of the Java Community Club have rallied to the aid of the newest member of their community with a plan to help defray medical and travel expenses for the family. A pork loin dinner with all the trimmings is scheduled for June 8, with a freewill offering. Thrivent for Lutherans will provide a matching amount.
In a separate fundraiser, members of the club are planning a raffle for a half-side of beef.
To everyone’s delight, Anika recently moved her hip all by herself, and then once more just for good measure! For Kassandra, Will and Anika, Sunday was a most phenomenal Mother’s Day!