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Parker’s Story – Thriving After a Congenital Diaphragmatic Hernia

April 20, 2022

After a positive home pregnancy test, Mary and her husband, Zach, were delighted but guarded because they had already experienced two losses within the past couple of years. With the support of their doctors every step of the way, they were optimistic and excited to find out that a healthy baby girl was going to be joining their family.

“Parker is our rainbow baby. And with everything she’s been through, she is quite literally our miracle,” Mary explained.

At around 20 weeks into her pregnancy, Mary was referred to a maternal-fetal medicine specialist for a level 2 ultrasound due to her advanced maternal age and previous pregnancy history. One moment they were admiring their little girl, looking to see if she had any resemblance to her sisters and the next, they were receiving a devastating diagnosis – their unborn baby had a congenital diaphragmatic hernia.

The following days were filled with confusion, worry and fear but once Mary and Zach were able to process everything they were going through, they were able to move forward. After much discussion with their midwives and OB, an additional MFM, and through their own research, they were ready to transfer care to the Chicago Institute for Fetal Health at Ann & Robert H. Lurie Children’s Hospital.

“Getting connected to CIFH was a breath of fresh air. From every phone call, email, and in-person contact, we were met with such a warm welcome that instantly added a sense of calm to the chaos of navigating such uncharted territory,” says Mary.

Their initial visit was a full day with a fetal MRI, an ultrasound, a meeting with a genetic counselor, a social worker, and their nurse coordinator. A team meeting was also scheduled at the end of the day so each specialist could come together to discuss their individualized care plan. Dr. Aimen Shaaban, Director of the Chicago Institute for Fetal Health, explained the diagnosis, severity and treatment plan to Mary and Zach, helping them prepare and set expectations for the journey ahead.

Mary describes that first team meeting as, “feeling immediately seen, empowered, and loved. We never felt rushed, only reassured by each physician’s expertise as they shared our family’s specialized care plan with such compassion and detail. The fog seemed to lift as we then had clearer idea of what to expect moving forward. What a sense of relief!”

Their baby girl decided to arrive a few weeks early. On August 29th, Parker June was born and came into the world doing remarkably well for her diagnosis. On her 5th day of life, Dr. Shaaban repaired the diaphragmatic hernia successfully and by day 10, Mary got to hold her baby girl for the first time. Mary and Zach were expecting Parker to be in the NICU for 3 months but after 30 days, she was ready to go home and meet the rest of her family

“Dr. Shaaban and Tricia, our nurse coordinator, always made us feel genuinely cared for with their calming presence. At just the right moment, when I needed it most, Dr. Shaaban gently said to me that the entire team will do whatever it takes to get Parker in my arms as soon as it’s possible. He knew my thoughts and fears before I even needed to say them out loud. Dr. Shaaban never once doubted that Parker would thrive following her corrective surgery.” says Mary. 

Today, Parker is doing amazing. She’s exclusively breastfed and not on any medication. She graces everyone she meets with a pure sense of joy and continues to surpass any and all expectations. Through this diagnosis and experience, Mary and Zach learned that joy can be found even in the darkest of trials. Parker’s story changed their family in such positive ways that they will carry with them forever.

The Chicago Institute for Fetal Health

With more than 40 years’ experience, The Chicago Institute for Fetal Health is a regional leader in the research and care of pregnant women with fetal complications. As one of only a few comprehensive fetal centers in the country, the institute is able to offer pre-birth counseling and care, as well as corrective fetal intervention if needed.

Learn more

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