Trinity’s story: Left-sided congenital diaphragmatic hernia (CDH)

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My husband and I discovered we were having twins at our first ultrasound of our first pregnancy. After the initial shock, we were simply elated to receive such a blessing. It wasn’t until week 25 that we knew something was wrong. It was a flurry of doctor’s appointments and driving back and forth to Houston for the next several weeks. We read all the articles and editorials, but nothing really told us what to expect.

Trinity had a severe left-sided congenital diaphragmatic hernia (CDH) with most of her organs in her chest. There is a 50 percent survival rate across the U.S., but we were fortunate to be near Texas Children’s Hospital which has a rate closer to 75 percent. I stayed at the Ronald McDonald House during the two weeks leading up to my scheduled C-section, and completed any school work I had in the house. Aside from the occasional scare with Trinity’s lack of movement, the rest of my pregnancy was fairly uneventful.

Birth day came and my entire family came to town to celebrate Trinity and Guinevere’s arrival into this world. A normal C-section is pretty unnerving in and of itself with the doctors removing the babies like toothpaste from the tube. Trinity’s silence when she arrived was probably what drove the entire situation home for me. She didn’t cry. It was a quiet flurry of activity as they tried to intubate her, which was a struggle from the bits of conversation I could catch. They whisked her away and my husband followed. Guinevere came out screaming enough for the both of them and my attention was diverted for the time being.

After everything calmed down, my husband went to visit Trinity and Skyped with me so I could see her. I couldn’t watch for more than a couple of minutes. She looked like a plastic baby doll hooked up to what seemed like a million tubes, vibrating from the breathing machine and a towel over her eyes. It was two days before I could work up the courage to see her in person. I would read her any books I could find and tell her about her new family, but it took everything to touch her and feel a weak squeeze from her hand in response.

Gwen and I were discharged a few days later. We came back every day for the next two weeks to visit Trin. After the corrective surgery, life seemed to go 100 miles per hour. I had to go back to complete my spring semester of vet school while my father stayed to keep an eye on Trin. Once I finished, I visited during the week with Gwen and went back on the weekends so my husband could spend some time with the baby. The nurses and doctors were beyond amazing, helpful and encouraging. They still try to see us when we are in town for an appointment.

In the end, Trinity surpassed everyone’s expectations and was discharged after only one-and-a-half months in the neonatal intensive care unit (NICU). She then only had to stay on oxygen for another month after that. She’s had only one more hospitalization and another surgery for bad acid reflux, but it has been smooth sailing overall. It’s a struggle getting her to eat or walk, but she is a delightful child looking to give the entire world a hug or smile. It has been incredibly difficult at times, but I wouldn’t change a minute of it.

Posted in Fetal Center, Neonatology, NICU, Patient Voices, Pavilion for Women

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