Articles and Updates from Phoenix Children's
Adalynn was born with complex medical needs that increased her risk for developmental delays. But every day, the now 2-year-old embraces life – defying expectations and spreading joy to her family and the team at Phoenix Children’s.
“A Miracle She Survived”
The first signs of concern appeared in early pregnancy for Adalynn’s parents, Shawnté and Zach.
A routine 12-week ultrasound revealed congenital issues, including high nuchal translucency and cystic hygroma – both potential signs of genetic problems. The unborn baby also developed hydrops, a build-up of fluid in different parts of her body.
Closely monitoring Adalynn’s growth in the womb, Shawnté’s maternal fetal medicine (MFM) doctor ordered more imaging. The Fetal Care Center at Phoenix Children’s met Adalynn’s family when Shawnté came in for fetal magnetic resonance imaging (MRI) during her 25th week of pregnancy.
This is when they learned Adalynn had several heart defects, including noncompaction cardiomyopathy and holes in the atrial and ventricular chambers. Because her condition was known prenatally, the Fetal Care Center was able to coordinate plans in advance with medical providers and the family for Adalynn’s transport to Phoenix Children’s after birth.
“Everyone believes it’s a miracle she survived through pregnancy,” says Shawnté. “She’s definitely a fighter.”
Transferred to Phoenix Children’s in Her First Hour of Life
Adalynn was born on May 10 at Dignity Health Chandler Regional Medical Center, where Phoenix Children’s neonatologists staff the Neonatal Intensive Care Unit (NICU) through a partnership between the two organizations.
Within one hour of her birth, Adalynn's care team transferred her as planned to nearby Phoenix Children’s NICU. At Arizona’s only Level IV freestanding NICU, Adalynn had access to hundreds of pediatric experts who could give her the best possible start to life.
“It was extremely relieving for Adalynn to be transferred immediately to Phoenix Children’s,” says Shawnté. “She was so sick that we knew she would need the absolute best care. That is exactly why we chose Phoenix Children’s.”
A Plan in Place
For babies diagnosed before birth with complex medical needs, the Fetal Care Center at Phoenix Children’s partners with their mother’s OB/GYN or MFM specialist to plan for a seamless transfer to the NICU. Knowing the complications to expect in advance prepares providers, as well as families, to respond immediately.
“It’s important to have as much information as possible so that we have a plan in place,” says Whitney Ruben, RN, a nurse care coordinator at Phoenix Children’s who works closely with Adalynn’s family.
“If we couldn’t see these issues until the baby was born and then the baby was just swept away unexpectedly, that could be really traumatic for mothers who've just delivered,” Whitney continues. “Knowing that Adalynn was getting transferred to Phoenix Children’s, her mom was able to make those first few moments with her new baby more meaningful. And she also can feel comfortable knowing that the baby’s in good hands and that everyone's on the same page.”
Looking for Answers
While in the NICU, Adalynn underwent numerous diagnostic tests.
In addition to congenital heart defects, Adalynn was diagnosed with various conditions that affected her breathing, swallowing, digestion and mobility. Other anomalies included pectus excavatum (malformed ribcage), an omphalocele (intestines are outside the abdominal cavity), a missing rib and clubbed feet. At 7 months old, Adalynn underwent surgery at Phoenix Children’s to repair the omphalocele.
Genetics testing revealed Adalynn has a rare condition called X-linked myopathy with excessive autophagy (XMEA). However, her caregivers do not believe the condition is problematic for Adalynn. They suspect she has a yet-to-be-diagnosed muscle or connective tissue/nerve disorder. Despite the mystery surrounding her genetic condition, Adalynn receives multi-subspecialty and multidisciplinary care to fulfill all her medical needs.
In the NEST: Early Intervention for Better Outcomes
After 16 days in the NICU, Adalynn was able to go home – an exciting milestone for the new family of three. Adalynn’s care was transferred to Phoenix Children’s Newborn Early Screening Team (NEST), a clinic that cares for babies born prematurely or, like Adalynn, born with complex medical conditions that increase the risk for developmental concerns or delays.
“We follow babies discharged from the NICU who are at high risk of having residual medical issues once they go home,” says neonatologist Deborah Tom, MD. “We focus primarily on their development and growth.”
For the first year, Adalynn went to the clinic about every three months. Then, she graduated to going about every six months. When she turns 3 years old, her care will be transferred to Phoenix Children’s Complex Care Clinic.
Adalynn’s NEST appointments involve an hour with the medical provider – a neonatologist, neurologist, developmental pediatrician or nurse practitioner – followed by an hour with physical, occupational and speech therapy services. The rehabilitation therapy team measures her development and prescribes specific exercises to help her progress.
“The benefit of the NEST Clinic is to monitor development and intervene as soon as we can,” says developmental pediatrician Dannah Raz, MD.
“One thing we know about kids with developmental delays – or those at risk for them – is the earlier we can get them services and support, the better their chances of developmental success,” Dr. Raz continues. “Our goal is to give the support needed to maximize their growth and development. The first three years of life are optimal time for brain development.”
An Entire Team of Specialists Care for Adalynn’s Unique Needs
Adalynn also receives care at Phoenix Children’s Aerodigestive Clinic, where she gets coordinated care for her swallowing, breathing and feeding problems from ENT (ear, nose and throat), gastrointestinal and pulmonary experts. These specialists collaborate to help her family make informed decisions about her care. It is the only multispecialty clinic of this kind in the Southwest.
Other specialists Adalynn sees at Phoenix Children’s include nephrologists, urologists, general and orthopedic surgeons, neurologists and neurosurgeons. With most of her care provided by specialists at Phoenix Children’s, Adalynn’s parents receive support for coordinating doctor and therapy appointments, and understanding their child’s needs.
“I love the fact that all of Adalynn’s doctors are together at one facility where they can see her chart and relay messages to each other,” Shawnté says. “They work together to come up with a game plan for her.”
Full of Joy
Despite the many health challenges she faces, Adalynn is happy and enjoys being the center of attention. She loves music, dancing, ducks and chickens. Mobility is a big challenge for her, and she gets frustrated struggling to move from one place to another. But her mom is hopeful that Adalynn will learn to walk soon.
Last year, Adalynn was selected for Phoenix Children’s Go Baby Go Program, through which she received a personalized, modified toddler car that allows her to get around.
While Shawnté and Zach worry about Adalynn’s future and how her medical issues will affect her life, they are her fiercest advocates and are grateful for her providers at Phoenix Children’s.
“It is such a relief having most of her doctors at Phoenix Children’s, and Adalynn has become familiar with them and with the hospital,” Shawnté says. “She gets excited when we go to different appointments there. It feels like home to us.”