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Soren’s Story: Beating the Odds Against a Congenital Diaphragmatic Hernia Diagnosis

May 04, 2022

At Erin’s 20-week anatomy ultrasound, her OBGYN noticed something startling. It appeared that her unborn baby’s heart was pushed to the other side of his chest. Due to the position of the baby, their doctor couldn’t get a good view of what she was seeing, so they were referred to a maternal-fetal medicine specialist to figure out what exactly was going on. Their baby was diagnosed with a congenital diaphragmatic hernia.

Erin was then referred to the Chicago Institute for Fetal Health for follow-up testing and assessment of the severity of the birth defect. Going into their appointment, her and her husband, Joe, were nervous and scared as any family would be after a devastating diagnosis. Soon after meeting their care team, they felt that this was not the end for their baby, it was just the beginning. “Betsy, our nurse coordinator, gave us hope for the future. It felt like she was holding our hand the whole way,” said Erin.

After a full day of testing, which included an MRI, ultrasound and echocardiogram, the team at the Chicago Institute sat down with Erin, Joe and both of their parents to talk them through exactly what was going on with their baby (and future grandson). Erin remembers how welcoming the team was; “They wanted everyone to be involved,” she said. The team determined that the severity of the diagnosis was moderate which meant there was a lot of hope for their baby’s future but a lot to prepare for leading up to his birth.

Dr. Shaaban and the multidisciplinary care team walked them through every detail of the diagnosis and every thing they could expect once Soren was born. From getting to the hospital the day of the delivery, to the actual delivery and then the NICU stay, Erin and Joe felt prepared for the journey they had ahead of them. “We are so thankful the team did not leave any details out. We were able to plan and prepare for what was ahead. We felt so supported and understood every step of the way, it was like we had an extension of our family out there taking care of and fighting for our son.”

Soren was born on April 26th and within the first few moments of his life, he was able to lay on Erin’s chest for a loving moment together. By day 5 of his life, Soren went into surgery to correct the diaphragmatic hernia, which resulted in a successful repair. After 2 months of being intubated, he was finally able to come off the ventilator; he fought hard to stay off it, but it was too much for his little body – he needed more time. Finally, after 113 days in the NICU, Soren was ready to go home, leaving with only an NG tube to help with feeding.

Despite some difficulties after he left the hospital, Soren is thriving today. He has continued physical therapy, occupational therapy, and speech therapy to help him grow and develop which has lent itself to his love for running around, playing at the park, meeting new people and being a big brother.

“Sitting down with the team at the Chicago Institute for Fetal Health changed everything for us,” said Erin. “We finally realized there was a group of specialists who genuinely wanted to do everything they could for us and our baby Soren. They allowed us to put all of our trust and faith in them – they paved the way in our journey.”

Erin’s advice to anyone struggling with a similar diagnosis is to surrender and trust that you are in the hands of people who see you, who will take care of you and who are invested in the journey with you and will carry you along the way!

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.

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