Zane’s Story: Overcoming a CDH Diagnosis

Before Zane was born, his mother’s obstetrician diagnosed him with a congenital diaphragmatic hernia, or CDH. Like most parents, Ana and her husband, Dustin, were both surprised and frightened by this diagnosis — it was something they’d never heard about during what had otherwise been a worry–free, second pregnancy for her.

The family was quickly referred to Fetal Care Center Dallas (FCCD) which specializes in successfully getting both mother and baby through many complex conditions and high-risk pregnancies, and is one of the most established and experienced in performing the surgeries and treatments specific to CDH.

Understanding the Condition

Dustin admits he and Ana were “really scared” when Baby Zane was diagnosed as a CDH baby. But an initial meeting with their physician specialist, Dr. Timothy Crombleholme, helped ease their fears and concerns. “Dr. Crombleholme was great. He provided us with so much information,” Dustin says.

Ana adds: “Dr. Crombleholme walked us through the whole process from where we were at that moment with all the questions, fears, pain, like physical pain, everything. He shared statistics with us, he gave us this bunch of papers with information, but he also gave us a lot of hope,” she says. “And I think that’s what made us take the decision of staying with the Fetal Care Center because he gave us hope.”

CDH is a birth defect that occurs when the diaphragm does not develop fully. The diaphragm is the important muscle that separates the chest from the abdomen. When it fails to develop correctly, it leaves a hole through which important organs in the abdomen, including the intestines, stomach, and possibly even the liver, can move into the chest. 

When that happens, the lungs don’t have the proper room to develop normally. When a CDH diagnosed baby is born, it can have difficulty breathing because the lungs are small and don’t work as they should.

While understandably worried about Zane’s health, their care team at FCCD helped Ana and Dustin realize they weren’t alone. A CDH diagnosis is estimated to occur once in every 2,500 to 3,000 pregnancies. CDH can occur on either the baby’s right side or the left side, but hardly ever on both sides. While the lung nearest the CDH is prevented from developing normally, the other long often is smaller than normal, as well. 

Exploring the Treatment Plan

Dr. Crombleholme explains that FCCD has an extensive protocol/plan to evaluate every fetal surgery patient. Every case begins with:

• Fetal MRI
• Fetal ultrasound
• Fetal echocardiogram
• Meeting with a genetic counselor
• Meeting with specialists well-versed in the condition afflicting the baby

Those steps are followed by a meeting of the whole team to review all of the imaging studies, discuss the severity of the baby’s condition, the prognosis, and treatment options in order to provide a unified approach toward a successful resolution.

All that makes for an incredibly long day for all involved, Dr. Crombleholme says. But thanks to the staff’s dedication and focus on involving and communicating with the family, by the time Ana was ready to deliver Zane, she and Dustin knew exactly what was going on and how it would be treated.

Personalizing Care for Each Unique Situation

Every baby’s development is different. While CDH might be the only major health problem in some babies, other babies who have a CDH could also have problems with the development of other major organs besides the lungs. That’s why FCCD performs such comprehensive exams when seeing the mother for the first time. 

Treatment of a CDH baby depends on the severity of the condition. The specialists at FCCD will determine if a baby needs to be delivered early or if it requires treatment before birth in order to allow its lungs to develop to the point that it makes it through a healthy delivery. There are also treatments for the condition following delivery of the baby. Once the baby has been delivered and the CDH corrected, there are extensive follow-ups to monitor the child’s health and development. 

A Successful Outcome

Ana and David become emotional while talking about the remarkable care and concern they were shown by Dr. Crombleholme and his assistant, pediatric nurse practitioner Madeline Crank, RN. “We never felt alone. That was the first impression we had,” Ana says. 

Like any other proud parents, Ana and David love to show off pictures of their smiling baby boy and are so happy and relieved that they found FCCD. “Zane was not another patient. They knew his name, they called him by his name, we felt like they really cared,” Ana says. 

Ana and Dustin readily recommend Dr. Crombleholme and FCCD for families whose baby has a CDH. “We lived it, we experienced it, and we are here, our baby is here, alive and growing healthy,” she says. “If we were able to overcome it, you can do it, too.”

If your baby has been diagnosed with a CDH, contact Fetal Care Center Dallas to explore your specific case and potential care plan.