Ava’s Story

On September 30, 2010, at thirty-six weeks pregnant, Todd and I were at a weekly prenatal checkup with my obstetrician (OB), Dr. McKown. I had lost a few pounds, and Ava had not grown from the prior week’s checkup. Dr. McKown thought a sonogram would be best, just so we could chart that everything was progressing along normally. I took Todd home, finished up work, and was back for the afternoon sonogram appointment. I had not had an official sonogram for a few months, so I was anxious to see Ava on screen again!

After thirty minutes of the ultrasound technician looking and not saying anything, my heart grew heavy. She left the room and then came back to look again. I asked her what she saw, and she told me she just took the pictures and the doctor read them. Tears started streaming down my cheeks. She left, and Dr. McKown’s colleague came in. I sat up, and Dr. Patton started to tell me Ava’s heart was on the wrong side of her chest and her stomach was very small. I was to go directly across the street and check into labor and delivery for another test. I made it to the car and called Todd. When I told him what was happening, I felt my world beginning to turn upside down.

Todd and I checked into L&D at Methodist Central Hospital in Dallas. Dr. Patton met us and did another sonogram. She set up an appointment for the next morning, Friday, with a maternal fetal medicine specialist (MFM), with whom we had had first- and second-trimester screenings a few months before. We were cleared to go home for the evening, but Dr. Patton said that depending on the next day’s appointment, I might have to be induced. We went home, packed our bags, and tried to make sense of the day.

Todd, my mom, and I arrived for our appointment on Friday hopeful that the detailed sonogram would show that Ava was ready to make her debut into our world. Instead, the doctor said Ava more than likely had a condition called congenital diaphragmatic hernia (CDH). After explaining the little he knew about CDH, I asked about survival rates in babies with this condition. He said the mortality rate is 55 percent. My heart shattered; I could barely breathe. He suggested we get a fetal MRI and set up an appointment with Dr. Twickler at University of Texas Southwestern Medical Center (UT Southwestern) the following Monday morning. We walked out into the waiting area in silence and sat down. No one said anything as we tried to comprehend and remember those big words that had been thrown at us: congenital diaphragmatic hernia. After a while, the receptionist came over and asked if we needed anything. Where do we go from here? What am I supposed to do now? I packed my "go bag" last night, and Howard came over to put the pack and play together. Todd . . . Mom . . . what’s happening?

I do not remember much after the appointment except Todd driving to my parents’ house, where we ended up staying for the rest of the weekend. That night, I frantically searched the Internet with a box of Kleenex. I was upset that this specialist, with whom we had had early screenings, had not detected this condition before. I learned that CDH is usually found between fourteen and twenty weeks. He had done three sonograms on Ava in that timeframe! How could something be wrong when I’d had a healthy pregnancy? I tried to stay positive, but with statistics that half of the babies do not survive, all I could wonder was how I would go into her nursery full of clothes, diapers, stuffed animals, rattles, and blankets without her. I finally went back to bed to find Todd awake. We cried together as I told him everything I had just learned about CDH.

CDH occurs in approximately one in every 2,500 births, with 1,600 cases in the United States each year. The cause of CDH is not yet known. The diaphragm is formed in the first trimester of pregnancy and controls the lungs’ ability to inhale and exhale. CDH occurs when the diaphragm fails to form or to close totally and an opening allows abdominal organs into the chest cavity, thus inhibiting lung growth.

Every patient diagnosed with CDH is different. Survival rates depend on the types and number of organs involved in the herniation and the amount of lung tissue available. There are many surgical procedures and complications that may or may not occur with each individual, including in utero surgery.

Roughly 50 percent of babies born with CDH do not survive. Of the 50 percent that do survive, most will endure long hospital stays, feeding issues, asthma, and other problems. A few of the survivors suffer from severe, long-term medical issues.

The next day, I sat outside with my parents, and we realized that Dr. McKown had saved Ava’s life. If she had not ordered that sonogram, Ava’s CDH would have gone undiagnosed and she would have been born at the wrong hospital with unprepared doctors. We decided then to find the best doctors for Ava and become as prepared as possible to welcome our miracle baby into this world.

I kept an online journal to keep family and friends updated on Ava’s progress. Ava continues to touch lives today. She taught me more about love, faith, and hope than I had ever known, without her ever speaking a word. The following chapters are her story taken from that online journal. Chapter 1 begins with Ava’s fetal MRI with Dr. Twickler, who is world-renowned in her field. This appointment was our first step in Ava’s CDH journey.