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Grace’s Story: Overcoming CDH

For some parents, a newborn’s cry can cause distress.  But for Marlen and Kevin, hearing their daughter Grace’s first cry brought relief and joy.  Grace was born with a congenital diaphragmatic hernia (CDH), a condition that occurs during fetal development that can lead to severe respiratory and other problems at birth. Grace’s cry signaled to her parents and the physicians in the operating room that her lungs were functioning, a blessing.

The couple first learned something was wrong during their routine 20-week prenatal ultrasound.  Only months before, they had suffered the tragedy of miscarriage yet were excited to become parents.  This time, they were hopeful for a good report.  But upon viewing Marlen’s ultrasound, the tech left the room to get a doctor.  Marlen turned to Kevin and said, “Something is wrong with our baby.”

Grace CDH Patient StoryGrace was diagnosed with CDH, a condition occurring in an estimated one in 2,500 to 5,000 babies. CDH results from abnormal development of the diaphragm, the muscle that separates the organs in the abdomen from the organs in the chest. This abnormal development, occurring before birth, causes a hole in this muscle that helps control breathing and aids in development of the lungs. The exact cause of CDH is unknown.

An absent or partially formed diaphragm allows the stomach and intestines to move into the chest cavity during pregnancy, crowding the baby’s heart and lungs. This can lead to compression and underdevelopment of the lungs (pulmonary hypoplasia) and potentially life-threatening breathing difficulties after birth. CDH may also cause high blood pressure in the arteries of the lungs (pulmonary hypertension), requiring the baby’s heart to work harder to pump blood to the arteries. Over time, the heart may weaken, resulting in heart failure. Some infants with CDH may have other complications, such as developmental problems with the brain and bowel.

Turning to The Fetal Center for answers

Upon diagnosis, the Spiveys were referred to The Fetal Center at Children’s Memorial Hermann Hospital for further evaluation. During their initial consultation with The Fetal Center, Marlen underwent an advanced prenatal ultrasound, a fetal echocardiogram, to evaluate the baby’s heart, and a fetal MRI, to help define the anatomy and help predict the severity of the CDH. This allowed the physicians with The Fetal Center to properly counsel the Spiveys and provide the best picture of what to expect after delivery.

In the weeks following their initial diagnosis, Marlen recalls being “in constant shock.”  She and Kevin appreciated the support of The Fetal Center’s UT Physicians clinical team. UT Physicians is the clinical practice of McGovern Medical School at The University of Texas Health Science Center at Houston (UTHealth).  “We couldn’t ask for a better place to go.  The team provided us with a lot of education about CDH and what to expect, and supported us throughout the process. The nurses even made all of our appointments for us.  We just had to show up.”

Marlen was induced a week before her due date, and Grace was born on March 1, weighing a healthy 6 pounds, 12 ounces.  Thankfully, her left lung was a good size and was functioning well. On March 4, a team led by The Fetal Center’s co-director KuoJen Tsao, M.D., The Children's Fund Distinguished Professor in Pediatric Surgery at McGovern Medical School at UTHealth, performed surgery on Grace to pull down her stomach, intestines and liver from her chest cavity, and to stitch up the hole in her diaphragm.

Explains Dr. Tsao, “In years past, newborns were rushed to the operating room to repair their defect soon after birth. However, we know now that there is a critical transition period after birth that can be fatal or can significantly harm CDH infants if managed inappropriately, or if surgery is performed too soon. After birth, the CDH team evaluated and managed Grace’s condition, to stabilize and prepare her for surgery. Grace’s operation went well, as expected, and without any complications.”

Grace - happy and healthy

Complications and long-term health effects from CDH depend greatly on the severity of the case. Long-term follow-up allows doctors to screen for, identify and treat the complications of CDH, before they become very serious problems. According to Dr. Tsao, the Comprehensive Program for CDH Care, affiliated with Children’s Memorial Hermann Hospital and the physicians at McGovern Medical School at UTHealth, operates the only long-term multidisciplinary follow clinic dedicated to CDH care in the southwestern United States. 

At the high-risk multidisciplinary follow up clinic, led by affiliated pediatric surgeon Matthew Harting, M.D., surgeons, pulmonologists, pediatricians, nutritionists, gastroenterologists, cardiologists and developmental psychologists work together as a team to treat the complex disorders associated with CDH. UT Physicians operates the only long-term multidisciplinary follow-up clinic dedicated to CDH in the southwestern United States.

The team sees patients in a single visit, according to a structured schedule that depends on the patient’s age and condition. Imaging scans are done in the morning, and patients see their specialists in the afternoon. This structure allows for the kind of team-based decision-making that can occur only when all physicians are on the same page, managing the individual needs of the child.

Says Dr. Harting, “This multidisciplinary approach allows us to optimize each patient’s care and understand their challenges in ways that were previously impossible. The affiliated physician teams and families work together, aligning expertise from multiple pediatric sub-specialties, to develop the best care plan, customized for each child’s individual needs.”

Dr. Tsao adds, “We are fortunate to have surgeons here, like Dr. Harting, who have dedicated their careers to improving the care and outcomes of babies with CDH. Dr. Harting’s long-term follow-up clinic is a unique program in the U.S., providing dedicated care and resources for CDH families.”

Through ongoing monitoring at the clinic, including regular X-rays on Grace’s lungs and hernia repair, and echocardiograms, Marlen and Kevin take comfort in knowing Grace is developing normally. At 12 months, Grace is a joyful, playful baby, reaching every milestone for her age. Says Marlen, “Grace is super active and loves running all over the place! She’s a social butterfly and loves the outdoors.”

The Spiveys appreciate the care shown to them by the team with The Fetal Center and the prayers and support they received from their friends and family.  They found three Facebook communities especially helpful – Breath of Hope, CDH Warrior Community and their own family’s page, Praying Through Grace’s CDH Journey.

Grace will continue to have regular check-ups with Dr. Harting and the affiliated team at the long-term follow up clinic to monitor her growth and development. Dr. Harting says, “TheHigh-Risk Multidisciplinary Clinic for CDH will continue to support Grace and her progress so that she may lead a normal life as a happy, healthy kid.”