Comprehensive Center for CDH Care

11/17/2025

RSV Season is upon us...what does that mean for your CDH child?

10/29/2025

09/22/2025

Tell us how nurses impacted your CDH journey! The Comprehensive Center for CDH Care is growing a new focus on nursing education. Nurses are such a key component to any successful program. We want to pour our time into our CDH nursing team to help them grow and nurture their knowledge and expertise. We enjoyed a lovely dinner and lecture series and threw around new ideas and enjoyed collaborating about patient care strategies. We are so thankful to our nurses who show compassionate, family centered care, with daily hands on care for our tiniest of patients. Feel free to name drop and share pictures of your amazing nurses who impacted you!

09/03/2025

My child is ready to be discharged from the NICU to home… what should I know?

You made it through all the ups and downs of prenatal care, delivery, life in the NICU (maybe even ECMO), and now your medical team is telling you that you are close to being discharged home! You are overjoyed… wait, nervous… excited… scared… asking yourself, “what will I do if…”

Preparing for discharge is an exciting time and the specifics depend on many factors: How severe was my child? A patient with an A defect is different than a patient with a D defect. Is my child on oxygen? Does my child have a G-tube? Maybe a tracheostomy? How far away do I live from the hospital (and care team) I now trust? What do my resources look like when I return home?

Managing medical complexity: Takes a team and good education to successfully navigate oxygen, a G-tube, a tracheostomy, or other medical complexities at home. Get educated. Feel comfortable. Have a backup Gtube.

1. Find a pediatrician that you trust. They don't have to be an expert in CDH.
2. Knowing who to call and who I will follow-up with – you need to have a clear idea about who to reach out to… Pediatrician? Surgeon? Pulmonologist? It’s best to have a specialized CDH clinic!
3. 75% of all CDH patients will be back in the ER and/or readmitted for care in the first year of life! Make sure you know the signs and symptoms of a CDH recurrence AND a bowel obstruction.

It is important that your care team reassure you that they are prepared to help you with this next phase. This is what you have been waiting for! What other questions do you have about discharge? Let us know!

08/25/2025

We want to wish all our CDH families a Happy Back to School month! We hope everyone had a safe and enjoyable summer break. We would love to see all those smiling faces and siblings on their first day of school. The CDH team lives for these happy photos!!

07/31/2025

Several weeks ago, the CDH team was recognized at a Memorial Hermann system wide meeting for our efforts and appreciation from a CDH family. Her parents sent us a beautiful email CELEBRATING her 1st birthday and sending us kind words for their appreciation.

"We had never even heard of CDH when she was diagnosed, and from the first meeting - the entire team has been absolutely tremendous. I remember at that first meeting, going through her specific case - finding out she was considered “severe” and what potential outcomes to expect. Dr. Harting emphasized that the goal was not just survival, but to allow these CDH babies to go on to live normal lives. It was such a long and stressful day, but what I remember most is feeling such warmth and empathy from everyone involved, that everyone was on the same page and would do everything possible to help our girl, and that is what ultimately led us to choosing to relocate to receive care at CMHH. "

Thank you for trusting us with her care and we are honored to get to celebrate her 1st birthday with you!

06/27/2025

What should I do if I find out that my child has TWO major issues: CDH plus an abnormal heart?

As if CDH is not challenging enough, approximately 20% of children diagnosed with CDH will also have a significant problem with their heart. In medical terms, this is known as congenital heart disease (CHD)… yes, this acronym is very easy to confuse with CDH!

In a brand-new publication in the Annals of Surgery, the CDH study group and collaborative investigators analyzed over 9000 CDH patients, including over 2000 with concomitant anatomic heart disease. Of those with “CDH+CHD” about two thirds have "minor" anomalies such as a small hole within the chambers of the heart. Unfortunately, about one third have a "major" anatomic anomaly. The bad news is that these can be some of the most challenging CDH patients to manage and they clearly have a decreased survival. The good news is that these unique and challenging patients should now be thought of individually and their survival, if managed at an institution experienced with handling both anomalies, is better than previously thought. These very special neonates deserve a chance! These children may need a repair of their diaphragm, a repair of their heart, several runs of heart lung bypass, and they can often have a lengthy hospital stays (often over 6 months). They also are at increased risk for needing a surgical breathing tube and/or a feeding tube. For more information, see https://pubmed.ncbi.nlm.nih.gov/40391440/

There are several centers in the US who are willing to tackle this very challenging combination of anomalies. Further, many centers continue to collaborate in order to learn more about how we can better take care of all CDH patients. As an example, The Comprehensive Center for CDH Care in Houston has a special program called the “CDH plus” program, specifically designed for ultra complex diagnoses like this. If you need more information email cdh@uth.tmc.edu.

Written by: Matt & Ashley

06/11/2025

We would love to introduce you to our newest member of the team, Olivia Pipkin! She recently joined the CDH team as our specialty nurse and will help getting patients in to be seen and with scheduling imaging needed for team appointments. She is also a great resource for any CDH related questions that come up. We are so excited to have her. Get to know her below:

What is your favorite song (or movie) and why?
-Wicked! I love musicals and grew up listening to the soundtracks
What do you enjoy doing on your weekends off?
-weekends I like to cook, spend time with friends and family and exercise
What is something that few people know about you but they should?
- I have a big family and 6 nieces and nephews who I love to see as much as possible
Do have a favorite quote or saying?
-“In a world where you can be anything, be kind
Why do you like taking care of children?
-I love taking care of children because it gives me so much joy and a feeling of purpose. I love to help them learn and watch them grow into their unique personalities!

05/27/2025

Congenital diaphragmatic hernia (CDH) had amazing research and discussions between pediatric surgeons at the 2025 Pediatric Surgical Association (APSA) in early May. What an wonderful time to learn new things about CDH and see old friends all over the country!

05/09/2025

Happy Nurses Week to all of our AMAZING nurses. We are so thankful for all you do for our patients and families. You are such an integral part of care for CDH children and we are very grateful for the hours of blood, sweat, and tears. Shout out a nurse in the comments!!