Odessa Family's Journey Shows How Cook Children’s Fetal Center Connects the Dots of Care for Moms-to-Be
The Cook Children's Fetal Center is a supportive partner for patient journeys, whether coordinating referrals, helping navigate parking or assisting with accommodations for a long-term stay.
By Ashley Antle
Angel Alderete and Yolanda Orduno, of Odessa, know the challenges of navigating the health care system for a child with medically complex needs, especially when living hundreds of miles from the care their baby requires.
Alderete and Orduno’s daughter, Renata Sofia Alderete, was born Jan. 8 with a diaphragmatic hernia, or a hole in the muscle that separates the chest from the abdomen. The couple learned of the complication with their developing baby when Orduno was about four months along in her pregnancy.
A diaphragmatic hernia allows the abdominal organs, such as the intestines, stomach and liver, to creep into the chest.
“It’s very serious and a lot of times lethal,” said Bannie Tabor, M.D., a maternal-fetal medicine specialist and medical director of the Fetal Center at Cook Children’s Medical Center. “It can compress the lungs and prevent them from developing normally. It can push the heart over and prevent it from functioning. A lot of times we see it with other anomalies of the heart or other genetic anomalies.”
Babies born with a diaphragmatic hernia often need immediate breathing support followed by surgery to repair the defect. Some babies require assistance from a heart-lung device called ECMO (extracorporeal membrane oxygenation). But not every medical facility has an ECMO machine or pediatric surgeons that can perform the surgical repair.
Orduno’s obstetrician in Odessa initially sent her to a specialist in Midland who confirmed the diagnosis and told the family their baby would need a higher level of care than could be provided in their West Texas home. That’s when the family was referred to the Fetal Center at Cook Children’s Medical Center – Fort Worth.
As any parent of a child with a complicated medical condition knows, navigating the health care system can be complicated, time consuming and overwhelming. Add to that the need for care in an unfamiliar city, at an unfamiliar medical center, with unfamiliar doctors while hundreds of miles from home, and it’s downright daunting.
That’s where Cook Children’s Fetal Center comes in for parents facing a difficult diagnosis for their unborn child.
“The Fetal Center is like a health-care concierge service for high-risk moms and babies,” said Mandy Little, the fetal nurse coordinator that oversees Cook Children’s Fetal Center. “The goal is to have one point of contact that coordinates and schedules all of their referrals for specialists and tests.”
Helping to Make Patient Journeys Easier
Mothers with high-risk pregnancies or whose unborn babies have been diagnosed with a medical condition often need to see multiple specialty physicians and undergo multiple diagnostic exams and tests during their pregnancy. Many times, these appointments and tests need to occur in a specific sequence so that doctors have the scans and information they need to inform their diagnosis and treatment plan. If the family lives out of town, they’ll often need to relocate to Fort Worth well in advance of delivery.
“Once the diagnosis is suspected or made, they'll be referred to the Fetal Center to be evaluated and receive consultation with all the different specialists,” Dr. Tabor explained. “We'll make a plan for postnatal care and then typically we'll try to relocate the family about a month before their due date. They’ll usually stay at the Ronald McDonald House and then either await spontaneous labor or we'll pick a delivery date.”
Orduno and her baby needed to be followed by a radiologist, pulmonologist, cardiologist, and surgeon.
“I could not imagine being a parent and having a baby that needs a fetal ECHO, MRI, pediatric surgery and craniofacial, for example,” Little said. “If the Fetal Center wasn't here, that patient would most likely have to call those subspecialties or wait for them to call them and the appointments wouldn't be on the same day. There would be different contact people for every clinic, and there wouldn't be any coordination to them. If you are having to call back and forth between different clinics and trying to get appointments on the same day, it actually can be very difficult.”
The Fetal Center main streams this entire process, giving moms-to-be a single contact with a nurse coordinator who knows how to connect the dots between referrals, specialty physicians and their clinics, diagnostic testing, scheduling and even little things like knowing where to park when arriving for appointments.
This can be especially helpful for families like Alderete and Orduno who live out of town.
Little and the Fetal Center team coordinated all of Alderete and Orduno’s visits. This included coordinating mom’s many referrals to multiple physicians and clinics, scheduling her appointments, helping the family navigate hospital parking and plan accommodations for their long-term stay prior to and following their baby’s birth.
“Once we were at Cook Children’s every day, the hospital kind of kept getting smaller,” Alderete said. “But the first time we showed up, it's like, ‘Oh my God, where do I go? What do I do? Where do I start?’ I want to say that Mandy walked us through everything and sent us as much information as she could for us to be able to find all of these places.”
Renata spent nearly three months in Cook Children’s Neonatal Intensive Care Unit. She underwent surgery to repair her hernia and an additional procedure to insert a feeding tube. Today, Renata is home in Odessa with her mom, dad and 7-year-old big sister. Her recovery continues as the family works to improve her oral feedings.
Alderete and Orduno encourage other parents to never lose hope.
“There's hope,” Alderete said. “They're really good doctors and nurses. Just follow the social worker or whoever you're in contact with. If you need anything, get with them and they'll guide you in the right direction. They won't let you fail. It's just a matter of being patient and having faith and moving forward.”
Orduno spent every day of Renata’s hospitalization at her baby’s bedside and says she learned to take things one step at a time.
“It's day by day,” she said. “Be patient and have faith and the day will come when the baby is ready to go home. You are really never alone. There is always somebody there with a few words that will give you hope and encouragement.”
Cook Children's Fetal Center
Pregnancy can be an amazing experience as you look forward to meeting your little one. But sometimes unexpected things can happen, like learning that your unborn baby may have a serious medical condition. Fortunately, our Fetal Center is here to help.
If your obstetrician or maternal fetal medicine specialist suspects a fetal anomaly, our team will work with you and your doctor to provide diagnostics, delivery planning and medical interventions for your baby once born. Referring providers know that their patient families have access to a multidisciplinary team of specialists, all in one location. That means that your baby can receive the specialty care they need, right here. And, of course, you can trust that you'll have access to the supportive care every step of the way.
We are here to help
Please know we are here for you. If you are interested in learning more about services we can provide, please call 682-885-2158.