The Bertolina Family

Scroll down to see updates as the Mann family progresses in their CDH Journey! (All updates are written and given by parents with consent)

Initial Backstory

Hello, We wanted to share an important update regarding our pregnancy and what the past few weeks have brought. At our 20-week scan in December, our firstborn child, Zoey “Hope” Bertolina, was unexpectedly diagnosed with Congenital Diaphragmatic Hernia (CDH)—a rare and complex birth defect affecting roughly 1 in 3,600 babies, where the lungs do not develop properly. Her diagnosis is considered moderate to severe, with an estimated lung volume of approximately 33% of normal. Following evaluations at Stanford Packard Children’s Hospital and UCSF Benioff Children’s Hospital, we were given a very difficult prognosis: a high risk of early mortality, an expected NICU stay of six months or longer, and a significant likelihood of long-term impairments, including chronic breathing and lung issues. We were devastated. The thought of bringing our daughter into the world only for her to suffer immediately was overwhelming, and we experienced profound grief during those early days. After many sleepless nights, Andrew discovered Dr. David Kays and the Johns Hopkins All Children’s Center for CDH, a program with a 90–95% survival rate and markedly better long-term quality-of-life outcomes. In a moment that still feels surreal, Dr. Kays personally called Andrew—at a time when Andrew was preparing to inquire about funeral arrangements. After that call, everything shifted. We flew down the very next day and met with the Hopkins CDH team on Wednesday, January 7th. While still cautious, we left that meeting with renewed and guarded hope. We were deeply impressed by Dr. Kays and his Center of Excellence—more so than anywhere else we had been. What truly sealed it for us was meeting several families whose children had been treated there—families celebrating one-year birthdays and reunions with their “normal” CDH babies. It was the happiest we had seen each other since Zoey’s diagnosis. We want to take a moment to express our heartfelt gratitude to those who have already made a meaningful impact on Hope’s life and on ours: -Bertolina/Bibra Family – Family comes first. Thank you so much for your unwavering support and for taking care of Otis 🐕 at a moment’s notice. -Glasser Family – For the intro / guidance around the Ronald McDonald House. It truly is a special community. -Monteverde Family – For keeping Tamale 🐈 company. -Matt Leonard – For grief counseling and compassionate support during this difficult time. -Rosario Family – For your ongoing understanding, flexibility and support. -Graham Lewis - For your compassion, empathy and natural skillsets for taking our lovely maternity photos 📷 -Snehal & Lou – For your help in navigating the Hopkins’ All Children’s System. Moving across the country is a big decision, we appreciate your help in navigating the Hopkins’ Hospital system and making helpful connections. We are also deeply grateful to have employment that allows us to work remotely and provides healthcare capable of supporting treatment that can cost between $1.5M–$2M+. We recognize how rare and privileged that combination is. We will be temporarily relocating to St. Petersburg, Florida in early March, with the hope of delivering her in late April and remaining in St. Petersburg for months after birth as she will be in the NICU/CDH Unit learning to breathe and eat. We know this will be a long and extremely arduous journey — the toughest journey we’ve faced so far. We are deeply grateful for the support we’ve already received—both near and far and support from organizations like Eden Calhoun, which provides support to families like ours who are faced with tremendous difficulties. Organizations like Eden Calhoun, give families like ours hope in an otherwise uncertain, unpredictable and devastating time. Thank you for the love, prayers, and kindness so many of you have already shown; they have meant more to us than we can adequately express. With love, Andrew & Bonnie