Beyond Congenital Cystic Adenomatoid Malformation (CCAM): Izzy’s Story

What happens when the joy and excitement of pregnancy is suddenly replaced with fear and uncertainty?

This is Danielle Chenard’s story about her daughter, Isabelle “Izzy,” now 10 years old. Danielle is Senior Research Program Manager at Connecticut Children’s Research Institute. These are her words.

Finding out you are pregnant is an exhilarating and life-changing moment for any woman. As soon as you see those two pink lines on the pregnancy test, your mind starts racing with all the possibilities and plans for the future.

You start imagining the little bundle of joy growing inside of you and all the amazing moments you will share together...

“She pointed out a mass growing in my baby’s lung.”

At twelve weeks into my pregnancy, I went for my first ultrasound scan, eagerly waiting to catch a glimpse of my growing baby. However, what I saw on that screen was not what I was expecting. The sonographer’s expression changed from one of excitement to one of concern as she pointed out a mass growing in my baby’s lung.

My heart sank and my mind went blank. I couldn’t believe what I was seeing and hearing.

The doctor explained that my baby had a condition called Congenital Cystic Adenomatoid Malformation (CCAM), which is a rare and benign mass of abnormal lung tissue.

“I was terrified, but I knew I was in good hands.”

I was devastated and scared. This was my first pregnancy and I wasn’t prepared for something like this. The doctor told me that I needed to see a specialist to monitor the mass, have genetic testing and determine the best course of action.

I was referred to Dr. Richard Weiss, a pediatric surgeon at Connecticut Children’s, who specializes in CCAM cases. I was terrified, but I knew I was in good hands. From the moment I stepped into Dr. Weiss’ office, I felt a sense of comfort and reassurance. He took the time to explain everything to me in detail, making sure I understood the condition and the potential risks involved.

He also made me feel like I was not alone in this journey and that he would do everything in his power to help my baby. Throughout my high-risk pregnancy, I had to go for regular check-ups and ultrasounds to monitor the mass.

It was a rollercoaster of emotions as the mass grew and shrank, but Dr. Weiss was always there to answer my questions and alleviate my fears. He was not just my doctor, but also a confidant during this difficult time.

"I remember Izzy rode to the OR in style, in a car of her choice, her favorite Taylor Swift song blasting"

As my due date approached, the mass had grown and it was determined that my baby would need surgery to remove it after she turned 2. This was a scary thought, but I knew it was necessary for the health and well-being of my child. Dr. Weiss and his team at Connecticut Children’s performed the surgery, a lobectomy on her upper right lung, with precision and care. It was a success and my baby girl was healthy and without any complications. Within just a couple of days after surgery, she was running around; nothing fazed her!

Looking back at this experience, I realize how fortunate I was to have Dr. Weiss and the team at Connecticut Children’s by my side. The nursing staff was very comforting and assured us we were safe, which I think helped with her recovery as well. They not only provided exceptional medical care, but also emotional support during a challenging time. They gave her a special blanket, pillow case and stuffed animal, which she still has to this day at 10 years old.

I remember Izzy rode to the OR in style, in a car of her choice, her favorite Taylor Swift song blasting. I’m grateful I was able to hold her hand to calm her down. Ultimately, it was because of Connecticut Children’s expertise and compassion that my baby and I came out of this ordeal stronger and healthier.

“My incredibly positive experience ultimately influenced my decision to join Connecticut Children’s as an employee.”

In fact, my experience with Dr. Weiss and Connecticut Children’s was incredibly positive and ultimately influenced my decision to join the organization full-time as a research associate.

Witnessing the outstanding care and teamwork at Connecticut Children’s firsthand made me certain that this was the kind of environment I wanted to be a part of.

Presently, I am honored to be a Senior Program Manager working in an exceptional organization and supporting researchers by continuing to providing support to families going through similar situations.

“Talk about it.”

Motherhood is a journey filled with highs and lows, but it also teaches us resilience and fortitude. My experience was challenging, but it taught me valuable lessons about the significance of having a supportive and knowledgeable team by your side.

My advice to others going through this is to talk about it. I joke that I ask too many questions which is why I’m in research. Your support system is really important.

I will always be grateful to Dr. Weiss and Connecticut Children’s for helping me understand this rare condition and ensuring the health of my precious daughter.