This post is sponsored by Lurie Children’s Hospital, but all of the opinions within are those of The Everymom editorial board.
"Most moms can attest that Google was their #1 ally during those early days of pregnancy when they had infinite questions about the little life growing inside them, like “What do kicks feel like?” or “Is spotting normal?” However, internet searches can quickly go from helpful to confusing to absolutely unnerving. Especially when symptoms lead to a pediatric chronic illness diagnosis that could alter the course of your baby’s future. And just when the internet felt like a place you could turn to for help, it’s now a source of anxiety.
We understand the importance of protecting your peace when facing an overwhelming situation regarding the health of your child. But if you’re feeling ready to arm yourself with more information for what’s ahead, we’re here to hold your hand through it all. Our team of moms consulted a team of pediatric chronic illness experts from The Chicago Institute for Fetal Health (The CIFH) at Ann & Robert H. Lurie Children’s Hospital of Chicago to build a robust resource for parents with questions regarding a new diagnosis that might make you feel in over your head. One thing we all have in common: Our passionate care for the wellbeing of children (and their families). Yes, the internet can be a scary place, but we hope that in our little corner, you feel safe and supported.
Read on for advice about navigating your baby’s new diagnosis from the nurse coordinators at The CIFH and a fellow chronic illness mom who’s also been through it:
Meet the Experts
Tricia Beelman, MSN, RN
Nurse Coordinator at The CIFH
Meet the Experts
Kristine Rimbos, MS, RNC-OB, C-EFM, NE-BC
Director, Nursing at The CIFH
You or your child received a new diagnosis: now what?
If you are still pregnant and your diagnosis has been confirmed, you may be referred to a fetal care center to initiate more specialized prenatal care. If your baby has already been born, then you may be referred to a specialized pediatric center for the same reasons. These specialized medical teams will create a care plan for your specific diagnosis and guide your family through the road ahead. At The Chicago Institute for Fetal Health, nurse coordinators are typically the first medical team members patients interact with, which is often a similar process at other specialized care centers as well.
How your medical team will support your family:
While you’ll meet plenty of team members on your child’s diagnosis journey, nurse coordinators are typically the primary contacts for their patients and are responsible for coordinating care from the first visit onward. Essentially, they’re your point person and solely there to make your life as easy as possible by consolidating appointments and connecting you to any outside resources you may need.
The CIFH nurse coordinator Tricia Beelman states, “We also do everything we can to empower patients to make the best healthcare decisions for their families by keeping an open line of communication and providing emotional support all along their journey.” Tricia and the other nurse coordinators at The CIFH helped break down what patients can commonly expect when starting treatment.
How should you prepare for your first few visits to a specialized care center?
In the world of healthcare, it’s understandable to feel overwhelmed by the mountain of information that’s being thrown your way. Add a less common diagnosis that requires specialized care and considerations to the mix, and it’s not uncommon for parents to feel the pressure of being brought up to speed. It will likely feel more daunting as you sit through your first few appointments, so here are a few tips to make that process more comfortable:
- Bring a laptop or other device for logging information or to help you pass the time during lengthy appointments
- Pack snacks or meals with you since some appointments can take several hours
- Bring a support person to your visit if possible, so they can provide support and take notes for you when you need a break
At The CIFH, they also arrange for their patients to have frequent breaks and provide nesting rooms if they need a few moments to process everything. Tricia also notes, “We ensure patients have our contact information, including our email addresses and phone numbers, so they always have a way to reach us with questions and concerns. We encourage patients to reach out to us at any time.”
Your new medical team has decided your family’s treatment plan, what’s next?
Your nurse coordinator will typically take the initiative to contact your referring or primary doctor with results and other relevant information about their treatment plan. To make this process as smooth as possible, they get everything communicated to primary physicians either the same day or within a few days after a patient’s appointment. “We make sure any clinical notes and imaging are also shared. We take the lead on these intraoffice communication efforts so the patient does not carry the burden of keeping all their providers informed.”
Tricia also remarks that if a primary doctor has a differing opinion on treatment than a specialist, their team handles that directly. “[We] ensure everyone is in agreement on treatment or plan of care. Often, the specialists will call the primary doctor directly to have this conversation.”
Find your network in the hospital and beyond:
In addition to nurse coordinators and the physicians providing care, many specialized care facilities also have social work teams that assist families throughout this life change. They can connect parents with support groups or networks of families since hearing the experiences of others is vital to a patient’s well-being. Someone who can attest to the importance of building your support team is Brandi Dotson, mom of twin boys Rhett and Hayes, and former patient at The CIFH.
A fellow chronic illness mom’s experience:
Both of Brandi’s boys were diagnosed with Congenital Diaphragmatic Hernias (CDH) at her 16-week ultrasound. CDH is a rare condition that occurs when the diaphragm—the muscle that separates the chest from the abdomen—fails to close during prenatal development. This allows abdominal organs (stomach, intestines, and/or liver) to move into the chest. When the abdominal organs are in the chest, they can crowd the heart and lungs and keep the lungs from growing normally.
CDH occurs in 1 in every 2,500 babies, and while that is considered rare, their situation is even rarer, with both babies having it (there are only seven known cases of this occurrence). Because of this, both Brandi and her husband had to travel seven hours to Chicago to seek specialized care at The CIFH. So if anyone understands the intensity of a chronic illness diagnosis, it’s her. “There are so many other families experiencing the same diagnoses, reach out to them—find your people.”
“Dr. Aimen Shaaban (The CIFH Director) and his team went over my medical images, explained the diagnosis in detail, and gave us the facts that we needed to hear,” Brandi recalled. They also requested that she temporarily relocate to Chicago by 32 weeks. However, shortly after the move, her boys arrived a few weeks earlier than planned. And so they began their NICU journey and the long road ahead of preparing for their upcoming CDH surgery and recovery.
While leaving her family and other three children during this process was not ideal, she was able to lean on her doctors, nurses, and social workers for hope and guidance. “From the beginning, our [social workers] set us up with the Ronald McDonald House and were 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.”
What other helpful advice should you know?
Both the medical team at The CIFH and Brandi agree: Taking proper care of yourself is just as important as the health of your child. Allow yourself to feel all the emotions—they are completely valid and worth acknowledging. “I had to step away and take a day for myself many times… So 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,” Brandi emphasizes.
It’s also important to educate yourself by engaging with a medical team you trust and not be afraid to advocate for yourself and your baby. You are your child’s voice, and the right team will respect that. For parents who may be feeling overwhelmed by a diagnosis, the nurse coordinators and social workers can offer other resources such as credible websites and information that support evidence-based practices based on the new diagnosis. Tricia notes that their team can make referrals for patients needing mental health resources and often encourages doing so.
Brandi recommended parents join online support groups in addition to in-person ones. With her boys needing g-tubes after being released from the hospital, she decided to seek out advice from other parents. “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.” She’s also joined other groups focused on her sons’ CDH diagnosis.
What Brandi wishes she had done differently:
We asked Brandi what advice she would give herself if she could go back in time to the beginning of her twins’ diagnosis: “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… I felt as if I tried to hide the diagnosis. I didn’t want to have those tough conversations with people.” She says she didn’t feel as if others would understand the severity of their diagnosis or really care. “I wish I would have taken those pictures and shared our journey,” Brandi admits.
Ultimately, there is no wrong way to process your child’s diagnosis. It’s whatever feels right for you and your family. But there is often comfort and strength to be found in community. In Brandi’s words, “I see you mama… You are not alone in this.”
Want to learn more about a specific condition?
Through our longstanding partnership with Lurie Children’s Hospital, we’ve written a full range of medical resources for parents covering various pediatric conditions, surgeries, and other commonly asked medical questions. Find what you’re looking for below:
Chronic Conditions
Pediatric Surgery
- Ear tube surgery
- Tonsil surgery
- Orthopedic surgery
- Pediatric anesthesia
- How to prep for surgery
- Common surgical questions
Other Medical Conditions
- High-risk fetal health conditions
- Heart conditions
- In-utero diagnosis
- Concussions
- Constipation
- UTIs
- Snoring
- Eye exams
About Ann & Robert H. Lurie Children’s Hospital of Chicago
Led by a team of world-renowned pediatrics experts, Lurie Children’s is the #1 pediatric hospital in Illinois and an institution we trust for all things kids’ health. With 140 years of clinical expertise, research, and community engagement, the team at Lurie Children’s is committed to putting children and their families at the center of everything they do. We are honored to partner with Lurie Children’s to help educate our readers about how we can help our kids lead a healthier future. Learn more about Lurie Children’s and find a doctor near you today!
This post was in partnership with Ann & Robert H. Lurie Children’s Hospital of Chicago, but all of the opinions within are those of The Everymom editorial board.