MUSC News Center
Mom celebrates 'miracles' that helped save her baby
Dawn Brazell | MUSC News Center | July 7, 2015
Photos by Sarah Pack
|Johanna Helton cuddles with her son, Jaylen, who is doing well despite a premature delivery and a wide range of health issues. Photo gallery For a spanish translation of the story|
With two boys already romping about her household, Johanna Helton figured she knew the ropes and was well prepared for her third son who was on the way.
Or so she thought.
When the Myrtle Beach mom, then 29, started to have contractions at 31 weeks, she went to be checked. Her doctors decided to have her transferred to the Medical University of South Carolina, which specializes in high-risk pregnancies.
“There’s a tendency to say it’s nothing,” she said, recalling that she thought it might just be a false alarm. Helton’s previous ultrasounds with her obstetrician in Myrtle Beach had not found anything amiss.
“I had that gut feeling, though, that there was something wrong. I think parents have that intuition.”
When she arrived at MUSC, she spent the next three days with a whirlwind of specialists who were coming and going.
“I thought it was just some complication, and that he was going to be premature. I never knew life could get so complicated that quickly. It was all the teams that you could possibly think of that were trying to get answers to all these questions of why. These bands on the ultrasounds caught their eye, and they saw his jaw was clearly underdeveloped, and something was going on with his hands and arms.”
Helton, who is glad to hear about the official opening of an Advanced Fetal Care Center at MUSC, understands better than most about the value of seamless, coordinated care for babies born with congenital defects. MUSC’s neonatal intensive care unit (NICU) admits about 900 babies a year, a large patient volume that requires a depth of expertise from the specialists on board who intervene during this critical period in a family’s life.
Even though it was overwhelming to have so many specialists working with her, Helton said she was glad they were there to make sure that Jaylen could get the treatment he needed immediately after birth.
Amidst consultations with pediatric subspecialists, including a cardiologist who wanted to do an echocardiogram of his heart, Helton was seeing a lactation consultant and being prepared for what having a baby in the NICU would be like. She took an NICU tour and tried to mentally prepare for what was coming.
The night before Jaylen was born, the Heltons got more bad news. Her son also had a common heart defect. “I was sitting on the ultrasound table not even knowing what an echo was,” she said.
“I knew something was wrong when the doctor came in. He said he was sorry to have to tell me that Jaylen had a heart defect and he would possibly need open heart surgery at birth. There was a risk of him not surviving.”
Helton, whose husband was at home caring for their other children, burst into tears. “I was crying here in front of a stranger.”
Her family rushed back to help her, and she consulted with Chris Goodier, M.D., a maternal-fetal medicine specialist, who laid out the options.
“I call Dr. Goodier our first miracle,” she said. “He made the first call not to let Jaylen go into distress. A lot of other doctors in other cases I’ve heard will keep the baby so it will keep growing, but I think he spared Jaylen a lot more hard work and distress. Knowing to intubate him right away and things like that gave him a better start.”
Another miracle came in that doctors were able to detect his heart defect before he was born. Some babies can go for years before they get diagnosed or the baby can be born in distress, struggling to breathe, she said.
“You need to know and be more aware when they are in the womb that they are going to need some serious intervention at birth to be able to survive. It can make a world of difference.”
Helton needed every advantage she could get. To make matters worse, excessive rain was causing flooding in Charleston. Extra efforts had to be made to get the right staff ready for her delivery March 29, 2014, including an NICU team, an ENT (ear, nose and throat) physician to handle opening Jaylen’s airway and a pediatric cardiologist.
“They were ready for him and for anything that might happen. Dr. (Chris) Discolo mentioned Jaylen was the hardest baby he’s had to intubate. He said he’ll forever remember Jaylen for that – giving him trouble already,” she said, laughing.
Jaylen, who was breech and weighed 3 pounds, 8 ounces, would eventually be diagnosed with Nager syndrome, a rare condition that mainly affects the development of the face, hands and arms. Helton said it has been a long, hard journey for them all, but fortunately her son seems to have a strong will.
“He’s baby Hulk, and I’m mommy Hulk,” she said of their nicknames. “You wouldn’t know how sick he is if you can see him fight.”
Jaylen received a tracheostomy, or breathing tube that is placed in the neck, at 2 weeks old and had his first open-heart surgery on June 11. He’s been admitted several times since, including to be treated for flu and pneumonia.
Despite all the procedures and specialists, Helton made sure she carved out bonding time with her son. She learned an important lesson during that period. “I had to learn unconditional love - a whole new bond - with my child. It was knowing that God is in control and that he doesn’t make any mistakes.”
One of Jaylen’s doctors, Sinai Zyblewski, M.D., a pediatric cardiologist, said his mother is an inspiration. Her son will continue to require care, including additional cardiac interventions, ENT surgeries and orthopedic care. The pediatric occupational, speech and physical therapy teams also are heavily involved.
“Despite his multiple congenital anomalies,” she said, “Jaylen has truly thrived and is doing very well because of his great parents and the multidisciplinary teams.”
Having good days and bad, Helton said she’s learned to take it one day at a time. Her son faces hand surgery this summer and then jaw surgery when he’s 2 or 3 so he’ll be able to get the breathing tube removed from his neck. She looks forward to being able to hear him talk and laugh.
“In this year I have learned more than I have ever learned in my entire life about things you really didn’t sign up for. You think, I wasn’t supposed to be a nurse, but as a parent you’re everything, and for that child you just will do anything.”
Her husband, Perry, is a school teacher and has been very supportive. They have a nurse who helps them care for Jaylen so they can have time to spend with their other sons. Helton just looks for something each day to be grateful for, she said.
“You just have to focus on that. Your baby is going to focus on your energy. Whatever you are, your baby is going to be. That’s what I have learned, too. You have to be strong. God put you in that situation for a reason, and you just got to be strong and inspire others who are going through something worse because there’s always someone who’s going through something worse.”
Her advice to other parents is to get good prenatal care, get second opinions and to follow their intuition if they think something might be wrong, especially when it comes to their baby’s future. “Just giving them a good start is critical. Their first breath is so important. It’s important that it is the right one.”
For more information about MUSC's Advanced Fetal Care Center, call 843-792-4477.