Forrest’s CDH Story
I was diagnosed at my 20-week ultrasound. It came as a shock. A group of doctors came into the room to tell me about a condition called Congenital Diaphragmatic Hernia (CDH). They told me it was hard to make out the specifics of the severity because it was so soon into our pregnancy. They told me it was okay if I wanted to terminate the pregnancy and that they actually recommended it because they have never really seen positive outcomes with CDH babies due to multiple side effects that could occur, affecting the baby's quality of life.
Our family chose to move forward, believing our baby would be okay. He was right-sided, liver up. At each checkup ultrasound, they would tell us his hernia was pretty big, with multiple organs up in his chest, and his heart shifted to the right side. But boy, was he active. We decided to get a second opinion at UCSF. We met with Dr. Roberta Keller, who specialized in CDH kiddos and was the head of pulmonary hypertension. She explained everything so straightforward while also caring for us as a family. Even though it was 4 hours away from our home, we decided we would be delivering there because of how at ease we felt with their team, and I fully believe we wouldn't have our baby boy if we decided to deliver anywhere else that was close to us. I was induced at 39 weeks, and we relocated to San Francisco. We left our beautiful home in Tulare, CA, left our dog with a good friend, left the comfort of our family and friends, and prepared our bank accounts to be strained.
Forrest was brought into the world on June 16th, 2024. We decided to name him Forrest.
It was a rough first few months after delivery. The first 48 hours of Forrest's life were grueling. He could not maintain his numbers. He would desat frequently. I was wheeled into my hospital bed to his ICN room to see him, and I can still vividly remember his skin and fingernails being a bright hue of purple because of the lack of oxygen that was circulating through his little 7 lb body. It was determined he needed to be placed on ECMO. As I was recovering from just giving birth, I was told he may not make it through the procedure because of how weak he was. A couple of hours later, we were informed that the procedure was successful, and he responded well. There was a lot of crying, praying, more crying, and more praying. There were peaks of hopefulness and deep, dark lows.
Forrest spent 11 long days on ECMO. He then had his diaphragm repair surgery and had to be kept “sedated” because he was so agitated with his chest tube. He worked hard, harder than any baby should have to, to maintain his numbers. Once his chest tube came out, we were finally able to hold him after almost a month. After that, he just seemed to thrive. We got to see his little eyes finally open as they backed off sedatives and narcotics that were keeping him in a comfortable state. We got to see his little personality slowly peek through. He would smile at his favorite nurses while intubated. He was and is such a joyous baby. He made the transition to CPAP and was on that for a bit while his lungs grew. He then started sprinting on high flow, and by miracle, we started a successful breastfeeding journey.
Each time he was faced with a mountain, he seemed to climb over it with ease. As his parents, it was miraculous to watch him be so strong when we were barely holding on.
He was discharged after almost 6 months on 1 liter of oxygen, a list of medications, and no G-tube as he had no oral aversion and was breast and bottle feeding like a champ. Forrest is now 11 months old. He sits up independently, babbling, off oxygen support and all medications, and regularly eats solids. He is our miracle, and I can't imagine our lives without him. We shared his story at the Christmas Eve service at our church, and we haven't stopped sharing it since. He showed us our strength as a family and that there is hope. He taught us to persevere and to believe, to rely on friends and family, and to ask for help. Tiny Hero was part of our support system and one of the reasons we chose life for our son because they showed us so many children born with CDH who were doing just fine. We hope to join in and be a ray of light in someone's storm that they may be walking through. There is hope for these babies, and many miracles have proven that.
