Mighty Fighters: Family’s Journey Away from Home for Twins’ CDH Care

Having identical twins is rare. Congenital complications are rare. But to have identical twins that both have a congenital diaphragmatic hernia (CDH) is so rare that there are only a handful of known cases in the world. Brandi and Calvin learned that their twins had a distinct finding of CDH at their 16-week ultrasound: both babies’ hearts were on the right side of their chest, rather than the left where it typically lies. 
 
CDH occurs when the diaphragm, a thin muscle underneath the lungs, does not completely form, leaving a hole connecting the chest and the abdominal cavities. Depending on how large the hole is, the intestines, spleen, liver and stomach may move up into the chest cavity where they will take up space from the developing lungs. As a result, the lungs develop poorly, leaving the baby with a smaller number of air sacs, blood vessels and airways. Some of these complications may not develop normally until after the baby is born. The Chicago Institute for Fetal Health (CIFH) is the only place in Illinois that treats CDH in utero. However, this procedure is not an option in twin pregnancies.  
 
We asked Brandi about her journey from learning of the twins’ diagnosis to the progress they have made in their first year home from the neonatal intensive care unit (NICU) at Lurie Children’s. 

Q: What was your medical journey through your pregnancy like?

A: This was my fourth pregnancy, and from the beginning, everything about this pregnancy was different. Early on, I began spotting. My doctor wanted me to come in before my eight-week appointment to be checked out. Everything seemed to be normal, except we were told we [may] be having triplets. She wasn’t 100% sure of the third baby, so asked that we come back the next week to confirm. The following week she confirmed we were having twins. At this point, due to my age and being pregnant with multiples, she referred me to a Maternal-Fetal Medicine (MFM) specialist at the University of Missouri, Dr. Jean Goodman.  
 
At our 16-week ultrasound, we were told that both babies’ hearts were on the right, not left, side of their chests and both of them looked to have CDH. I remember that day so vividly. So much flooded our minds: ‘what is this? how does this happen? Will they survive? Why us?’ Our specialist assured us that she would guide us through this. I remember her specifically telling us, “Do not read too much into it online. It can be extremely scary,” and, boy, was she right! Survival rates varied for singlets, but there was very little research on cases of multiples.  
 
Two weeks later, we returned to confirm the diagnosis with an MRI scan. Our sweet babies were diagnosed with CDH. After the diagnosis, our specialist informed us the University did not have a program to care for babies with CDH, nor did they have extracorporeal membrane oxygenation (ECMO). It was at this point that we had to decide what to do next. Our MFM and the pediatric surgeon referred us to Washington University in St. Louis, two hours from home. We were then told that our insurance was out-of-network, and they would not accept us.  
 
She returned with a referral to The Chicago Institute for Fetal Health and Lurie Children’s in Chicago and assured us that this was the best place for us to be with our babies. Not only were we trying to process the diagnosis, but now we were faced with the idea of having to relocate seven hours away to care for the twins.  
 
We made the trip to Chicago and met with the amazing team at The CIFH, which specializes in CDH, and the team there gave us hope for our little ones. Dr. Aimen Shaaban and his team went over my medical images, explained the diagnosis in detail, and gave us the facts that we needed to hear. While he could only say he had experience with singlet births and CDH, he was hopeful of his continued success with our twins. They requested that I relocate to Chicago by 32 weeks with hopes of me carrying the twins to 35 weeks. 
 
We packed up our belongings and checked into the Ronald McDonald House [when I was just] shy of 32 weeks pregnant. The next day, we went in for a day of appointments which included an MRI, ultrasounds, a non-stress test (NST), and a tour of the NICU. The ultrasound showed a disruption in the membrane, suggesting a possible tear that could potentially lead to the entanglement of the twins' umbilical cords. I was then required to do ultrasounds twice a week and daily non-stress tests for the duration of my pregnancy. That Friday, I went to the triage clinic at Prentice Women’s Hospital for a NST and began having noticeable contractions. The contractions began to progress, and stopping them was unsuccessful. From there, I was rushed to L&D, and everything happened very quickly. They administered my epidural and performed an ultrasound, which showed that a cesarean section was the safest delivery option at that moment, as the doctor could not detect a membrane. Within 45 minutes, both babies were delivered. They were immediately put on ventilators and were moved to the NICU. Baby A (Rhett) was born weighing 3.0 pounds and baby B (Hayes) weighed 3.3 pounds. 

Q: What was the treatment and recovery like for the twins?

A: We had a long road ahead of us. We were in a new city, seven hours away from our three other children and our family. We had to lean on our doctors and nurses for hope and guidance. Every day was something new and unknown, but we knew our boys were in the best hands possible.  
 
Hayes had his hernia repair surgery at 14 days old, and Rhett had his a few weeks later at 27 days old. Both boys did amazing. After their surgeries, our only goal was to get them stronger and healthy enough to wean off the machines (oxygen, nutrition, and pain medicine), and to be able to feed on their own. They were strong, mighty, and what fighters they were. At 83 days old, Hayes was released from the NICU, and Rhett followed behind at 108 days old. We were finally able to return home to Missouri to be with all our children in one state and under the same roof.  
 
The boys just turned two years old, a milestone we are so blessed to be able to celebrate. They are the funniest, most energetic, and sweetest little ones who always keep us on our toes. They are starting to talk more and more now, and we are working on putting two and three words together. In December 2024, they had their g-tubes removed and have been eating like champs ever since. While they are still on the smaller side, weighing just 20 pounds each and wearing 12-month clothes, our medical team has assured us there's nothing to worry about unless they start losing weight. We couldn't be more proud of these little fighters and all they've overcome in the past two years. 

Q: If you could go back and give yourself any advice when the twins were diagnosed, what would it be?

A: To enjoy the pregnancy and cherish every moment of it, especially since it was my last. It was such a time of unknown that I wanted to almost ignore it so it would go away or get better. With my previous pregnancies, I did all the baby bump pictures, updates on social media, and was always talking about my growing baby. With this pregnancy, I felt as if I tried to hide the diagnosis, so I didn’t have to have those tough conversations with people. I wish I would have taken those pictures and shared our journey.  

Q: What would you say to a mother whose child received a life-altering or fetal diagnosis?

A: I see you, mama! You are not alone in this. There are so many other families experiencing the same diagnoses. Reach out to them and find your people. With the boys having gastrostomy-tubes, it was very new to us, and not explained all that well prior to leaving the hospital. I quickly found Facebook groups to join specifically for parents of “tubies.” These pages were extremely helpful in navigating everything ‘g-tube’ and have taught me a lot of useful information. I have also joined other groups for CDH diagnosis. 
 
Your doctors and care team are with you every step of the way. Lean on them for guidance, comfort and hope. Utilize your social workers. They are there to help you and your family succeed and are amazing at what they do. From the beginning, our social worker set us up with the Ronald McDonald House and was always readily available with answers. Once in the NICU, they were there to help with parking fees at the hospital, food costs in the cafeteria, and anything else we had questions about. They are extremely knowledgeable in ways to get the support you need while focusing on your baby.  
 
Be your child’s voice. You are their biggest advocate. This has been encouraged to us multiple times by our sons’ therapists. 
 
Lastly, mama, don’t forget about you! Your mental health is just as important as your baby’s health. If you can’t give your all, your baby will not succeed. I had to step away and take a day for myself many times while the boys were in the NICU. It’s not an easy place to spend every day. Whether it is leaving the hospital to grab lunch, or booking a session at the spa (yes, I did), do what you need to reset and keep your mind healthy. 

Find out more about The Chicago Institute for Fetal Health