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Rebecca Schroeder was born and raised in Nicholasville. While she and her husband’s first child was in utero or in the womb, the child was diagnosed with Congenital Diaphragmatic Hernia (CDH).  

Schroeder now has an organization called the CDH Foundation to provide financial and emotional support to parents and families going through the loss of a CDH child or the struggles of supporting a CDH survivor– including the very common rehospitalization of these children. 

On Saturday, October 12, the CDH Foundation will host its first annual family reunion and memorial walk at West Jessamine Middle School on 1400 Wilmore Road in Nicholasville. The event will include walking, talking, games, a cookout, and a luminary lighting at 6:30 p.m. to honor the CDH patients who have died from the condition, after which will be spent silently walking. The webpage for the event, which can be found under the events tab at theCDHfoundation.org, states that even if you cannot attend the walk, you can still purchase luminaries for your loved ones. For more information on how to get involved, see the organization’s website events tab. from 4 – 6 p.m. before the luminary lighting will be spent talking and connecting. Schroeder is currently looking for donors to provide hot dogs for the event. 

As a social worker, Schroeder believes deeply in the strength of community. She wants central Kentucky and Jessamine County parents with children with CDH to know they’re not alone and that she and a large community of people who get it are with them.

According to the Children’s Hospital of Philadelphia, also known as CHOP, which specializes in CDH– It is a life-threatening condition in which the diaphragm does not form properly, leaving a hole in the muscle through which the abdominal organs move into the chest. The migrating of abdominal organs into the chest compresses the lungs and prevents them from growing and developing as they would without the presence of CDH. 

Underdeveloped lungs can cause life-threatening complications such as breathing difficulty, chronic lung disease, gastrointestinal reflux, and pulmonary hypertension (high blood pressure in the lungs), the latter of which is also the leading cause of death for CDH babies. 

It’s more common to be born with CDH than to be struck by lightning, but most people have never heard of it. Throughout the world, a baby with CDH is born every 10 minutes. In the U.S., at least four families receive a CDH diagnosis every day. The condition has a survival rate of about 70 to 80 percent in America and other developed countries. 

Lily experienced rehospitalization after a cold had devastated her health a couple of years ago while her brother Howie was just coming into the world. She also experienced regular tube feeding due to necessity. Schroeder said people would ask her when Lily would be able to stop tube feeding, to which she responded that she was just happy her daughter was alive.

According to Rebecca, Lily Katherine Schroeder is now 6 years old and doing really well. She is now a big sister to her two-year-old brother, attends kindergarten in Jessamine County, plays soccer with other kids on the autism spectrum, and does applied behavioral analysis therapy, a widely accepted therapy for children on the spectrum. 

Although she’s healthy now, the diagnosis and process are traumatizing for parents, families, and patients. It certainly was for Rebecca as the mother of a CDH survivor. It was also extremely isolating. 

After getting married in 2010, Jeff and Rebecca moved to Los Angeles for a year and then to Chicago for ten years. Rebecca pursued her higher education, receiving her Bachelor’s Degree at Moody Bible Institute and her Masters in social work at Chicago’s Loyola University. 

Rebecca had several procedures to get pregnant with Lily. She finally got pregnant while pursuing her Master’s degree. 

While pregnant, Rebecca’s OBGYN diagnosed Lily with CDH. Rebecca’s mother and late sister were with her for this diagnosis, “It was a complete God thing,” that they were there, Rebecca said. 

Without time to process, Rebecca underwent multiple testing rounds to confirm the diagnosis. Lily had 20 percent lung volume in the womb, and every abdominal organ was in her chest. 

Treatment options are limited for children with CDH. In America, after a CDH child is born, they are often given Extracorporeal membrane oxygenation (ECMO) to stabilize them with help from cardiac and respiratory support. After this extended life support, which Lily was on for 11 days, children often get surgery to relocate their abdominal organs out of the chest and back into the abdomen, blocking the hole around the diaphragm that allowed them to migrate in the first place. Although research does not show a clear correlation, there are theories that long-term life support for infants can lead to an autism diagnosis. It is commonly found that children who go on ECMO experience “neurodevelopmental problems.”

Researching this condition and ways to get involved with its research was a part of Schroeder’s motivation to start the CDH foundation, in addition to her podcast, Real Talk CDH, which can be found anywhere you listen to podcasts. She also has a children’s book and is working on another that gently explains CDH for young CDH patients’ siblings, “Alphabet Soup: My sister’s fight against CDH.” It can be found on Amazon. 

In terms of her interest in research involvement, Schroeder has an interview with a CDH researcher in Canada who works a lot with MRNA to find ways to beef up CDH infants’ lungs before birth. This researcher also specializes in FETO, which is a very common prenatal therapy that can treat fetuses with moderate to severe CDH and prevent them from ever having to go on life support. It is a minimally invasive fetal procedure that can prevent fetuses from dying after birth from CDH. Although common in Canada, the procedure is unfortunately in experimental phases and not yet available for American patients. But Schroeder says she is thankful researchers are working on it. 

Another inspiring moment that led Schroeder to start her foundation was when a parent put her baby with CDH into Schroeder’s arms. “I felt hope for the first time,” she said.

Since then, Schroeder has had countless photos of Lily in the arms of struggling CDH parents. 

After dealing with the isolation of a CDH, Schroeder had the idea of support groups for families going through the same thing she was, and the loss of CDH children. Schroeder kept getting rejections for bringing the idea to several CDH organizations.

That’s when she realized she would have to do this herself. In 2022, she founded the CDH Foundation. 

Now, the foundation supports CDH parents and patients who are otherwise alone. There is a monthly book club for CDH moms. “I wanted to have a mom group where we do a book club, and for just a minute, we’re not just medical moms. We’re moms, and we’re also women who want to read a book and disappear into the pages,” she said. 

The foundation also has an infant or child loss support group called Grief Share, one of the big things Schroeder knew she wanted to do with the foundation. This grief group is not connected to the national grief share program or its curriculum. 

In addition to their support groups, there are group text threads with women nationwide. These groups include threads where the women may vent, send silly gifs, or even discuss how to incorporate their lost child in a family holiday. The group also provides support for women who are pregnant again after losing a child to CDH, which she said is understandably terrifying. Schroeder is currently working on setting up a group chat for dads and for children who have lost their siblings. 

Schroeder also works with fellow CDH moms who run the foundation to send care packages to families nationwide. If you are unfortunate enough to send your child home after they are born with CDH, 85 percent still face hospitalization within their first year. One of these care packages is a rehospitalization package based on a gift box with lotion and self-care goodies Schroeder received for herself when Lily was in the NICU from her husband’s coworker’s family who also had a child in the NICU. The foundation also sends grief care packages with a few items, including a picture of the lost child with their name painted onto the frame. 

Another helping hand that the CDH Foundation offers is rehospitalization grants. Schroeder said that her daughter’s 108 days in the NICU cost the family 3 million dollars. She wants to remove some of that stress for families already returning to a dark situation. The foundation also provides loss grants so that families can be relieved of some of their financial stress and focus on the hard work of grieving. 

The nonprofit organization raises funds through a yearly $10,000 donation from Schroeder and her husband and monthly $5 donations made through theCDHfoundation.org under the “get involved” tab that leads you to the “become a $5 to thrive monthly donor” page. The Foundation has a few sponsors, as well as multiple friends and family members who are $5 monthly sponsors. She does not take a salary, and 90 percent of the foundation’s income goes back towards CDH families. All members of the CDH Foundation team are volunteers. According to the organization’s website, around $36,300 has been given directly to CDH families since the foundation’s formation in 2022. 

“They say it takes a village to raise a child and for a medically complex child it takes the world,” Schroeder said. The Foundation currently helps people nationwide but has gotten requests from families in Latin America, Canada, and England. Although she doesn’t have the reach and resources to help these families yet, she does want the organization to expand to be able to do so one day. 

Schroeder’s mother, Peggy Roe, remembered a recent vacation their family went on recently with the kids and Peggy and Schroeder’s husbands. Even then, on vacation, “We had mothers of CDH children come to where we were because they knew she was coming, and they had a little get-together, and she’s really friends with so many of these CDH mothers,” Roe said. “They call her for guidance.”

CDH 1: Rebecca Schroeder with her newborn daughter, Lily Schroeder. (Photo submitted)

CDH 2: Recent Schroeder family photo. (Photo submitted)