Dayly's Story - Congenital Diaphragmatic Hernia (CDH)
“You have bronchitis, an ear infection, pneumonia....and you’re pregnant.” Our fourth pregnancy started out anything but average, yet so welcomed. We were thrilled with the news, and named her the day we found out she would be our fourth daughter. Dayly Hope. I still get butterflies over how much I love the sound of her name.
Nine months flew by with textbook ease, and although my previous delivery had been at home, I decided Dayly would be born at the hospital. My water breaking three weeks before my due date was the first indication that this delivery might not be like the others.
After twelve hours of no contractions and no progression, the hospital midwife suggested we start a little pitocin to move things along. At noon I felt my first contraction, and by 2 o’clock Dayly was in my arms. A tiny 6lbs, but otherwise the picture of newborn perfection. We cuddled and entertained visitors all afternoon before settling in for our first night together. The labor and delivery ward was full of laboring mommas, and due to me being an “old pro” with newborns, I was the first to be moved off the floor and into a room down the hall. Dayly slept in my arms while I dozed in peaceful bliss.
At 2am our nurse randomly popped in to check on us. She said that even though the timing was odd, she just wanted to make sure we were doing ok. I assured her we were, but took the opportunity to use the restroom while she held a sleeping Dayly. When I returned I was met with a wide-eyed stare from my nurse. “How long has Dayly been hiccup-breathing like this?” she asked. As far as I knew, it had started while I was in the restroom. I hadn’t seen or heard it at all before that moment. “I’m going to take Dayly with me to the nursery for a minute, just to be sure everything is ok” she said. “...I’m sure it’s nothing.” And she placed Dayly in her bed and rolled her out the door.
Little did I know, as I settled back into bed and dozed off, that my baby coded the moment she left my room. This random 2am visit from our nurse had turned into an emergency intubation, chest X-ray, and LCDH diagnosis. After getting Dayly stabilized, the pediatrician woke me with the news, “Dayly’s heart is on the wrong side of her chest, and both of her lungs are being crushed by her intestines. A flight crew and helicopter are on their way from UC Davis to transport Dayly on life support for a surgery to save her life.”
It was surreal. She had just been in my arms, breathing perfectly an hour before. I got dressed and made my way to the nursery where I asked to see Dayly. “She’s...the sick one” I said, my words and reality hitting me like a train. I held her hand while we waited for the flight crew to arrive. Then I watched as they wheeled her away to the waiting helicopter. “It’s called CDH, but don’t google it.” One of the flight nurses gently advised.
Dayly was “snowed” in a deep sleep for 24 hours upon arriving at Davis, allowing her to stabilize before surgery. On operation day, the surgeon shook our hands and said, “I never say this, but I just feel so much hope for your daughter.” “Well, her name is Dayly Hope, after all” we replied, smiling. Allowing the surgeons words to ignite hope in us. Dayly’s repair surgery went perfectly. They first attempted the repair laparoscopically, but informed us later that she didn’t tolerate that method well. And so, Dayly received the infamous CDH “line” as she now calls it. The scar that includes her in a special club of survivors.
After the repair surgery Dayly broke hospital records in her recovery. On day six we were able to hold her again. It felt like years since that night in the hospital when I unknowingly handed her off to use the restroom. On day 10 I was able to nurse her again. And on day 17, with her nursing like a champ and gaining weight, she was discharged. The fastest full LCDH recovery in UC Davis history at the time. That was 9 years ago, and other than a few extra probiotics and a hearing aid, Dayly Hope is an average nine year old. With a “line” scar and a story that she’s proud as punch of.