On Sunday, mothers will take center stage, showered with flowers and kind words for the important role they play in all of our lives. Take a moment to admire Linna Nieves, who especially embodies the sacrifice, determination and unconditional love which are integral qualities of all great moms.
Linna, an account relationship associate at Huntington Bank in Youngstown, first became a mom 10 years ago when her son Eddie was born. Eddie, a fifth grader at Austintown Intermediate School, started begging for siblings when he turned 3. She and her husband, Heriberto, also wanted to expand the family, but after several years of trying to get pregnant again, Linna assumed that at 35 years old, she had become infertile.
So imagine their delight when Linna discovered she was pregnant with not 1 but 2 children.
Early ultrasounds during her 19th week of pregnancy revealed that both boys had open neural tube defects. Several providers suggested the Nieves might want to consider terminating the pregnancy.
“Termination was absolutely not an option for us,” said Linna. “I was already thinking ahead, about what I was going to do to support my boys.”
Thinking ahead and making a plan is essential with a pregnancy like Linna’s. She was referred to the Fetal Treatment Center, where a comprehensive team helped her prepare a plan to give the twins the best chance at survival.
Under the direction of Drs. Melissa Mancuso and Katherine Wolfe, perinatologists with Akron Children’s Hospital’s Maternal Fetal Medicine, every possible detail of the birth, delivery and postnatal care was considered and prepared. Weekly ultrasounds to monitor the twins’ growth meant lots of travel from her home in Austintown to Akron and meetings with Neurosurgeons Drs. Tsulee Chen and Gwyneth Hughes. For Linna, the trip takes an hour each way but the peace of mind knowing that her boys were getting the best care possible made all the time spent in the car worth it.
“Our Fetal Treatment Center offers a cocoon for parents, surrounding them with all the subspecialists they need for delivery and newborn care. Our team includes genetic counseling, nurse coordinators, neonatologists and neurosurgeons,” said Dr. Wolfe. “That’s why we are housed here in the hospital. Many of our patients are going to need lifelong support from many of our pediatric providers.”
When the doctors noticed that one twin was not getting adequate flow through his umbilical cord, Linna began a 5 and half week stint of monitoring at Cleveland Clinic Akron General. There was a real risk of losing one of the twins and Drs. Mancuso and Wolfe wanted to keep Linna under a watchful eye. She was only able to leave the hospital only once during that time, for her baby shower.
“It was hard for us,” said Linna. “But when we heard the diagnosis, my family and friends came together. We knew we had to do whatever it takes to give the boys the best quality of life possible.”
Linna spent much of her time cloistered away in the labor and delivery unit reading the Bible and journaling about her experience. Despite many attempts to Google her boy’s condition to help her prepare for her boys’ birth, there was no information to be found online. Her doctors say that’s because there is no other pregnancy of this type on record, and that’s when Linna decided she wanted to document the pregnancy and share her story to help others who might find themselves in this situation.
“I have maintained a joyful attitude during this whole pregnancy because I know that’s the best environment to help my boys thrive in the womb,” she said. “I formed relationships and found solace with the other mothers who were on bedrest in the unit. And I am especially grateful to my pastors for their many visits. They really helped lift me up.”
It was a joyful delivery when Dr. Wolfe and Dr. Stephen Bacak delivered the twins at 31-weeks gestation on May 4.
Linna and Eddie had already decided many weeks before to name the boys Cairo and Micah. Micah, the twin who was so closely monitored during the pregnancy, weighed 2 pounds, 11 ounces, and Cairo weighed 3 pounds, 13 ounces.
I always thought Micah was the feisty one throughout the whole pregnancy. He was always moving around and causing trouble,” said Linna. “It was amazing to hear his cries at birth, and it confirmed what we already knew all along, he’s a fighter. Cairo was always my laid back boy.”
Because of their open neural tube defects, Linna wasn’t able to hold her boys directly after birth, a moment many moms especially savor.
Instead, after a quick visit with the boys in their traveling isolettes, the twins were whisked away to the Neonatal Intensive Care Unit at Akron Children’s, where they were monitored and prepared for surgery.
Dr. Hughes said all along she wanted to perform the closure operation on the boys as soon as possible.
“Children with open neural tube defects do best if they are operated on within 72 hours of birth to prevent the risk of infection,” she said.
She was able to perform the surgeries May 5, less than 24 hours after their birth.
“Micah was able to have his smaller defect repaired fairly easily using his own skin, but Cairo’s opening was bigger and required a much longer surgery and a skin graft.”
Both boys are recovering well from their surgeries. Micah is already showing a lot of improvement, and much to Linna’s delight, she was able to cuddle her sweet boy for the first time May 10.
Cairo’s recovery will take longer, due to the substantial graft that was required to repair his defect.
Linna says she will take each day as it comes, and her goal is always to provide the best life possible for her twins. Only the future will reveal the effect the open neural tube defects will have on the boys’ development. Dr. Hughes is optimistic that Micah will be able to someday walk with the help of physical therapy. Cairo’s ability to move his legs is much more limited.
“They may be identical twins but each of my boys have an individual path in life and are going to be amazing people in their own right,” said Linna. “Having a disability certainly isn’t going to keep them from changing the world in their own way. God has a plan for each of my boys and we’re going to support them in every way possible all along the way.”