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A CDH Family’s Story and Fundraiser


A CDH Family’s Story and Fundraiser

One of our wonderful CDH families recently held a fundraiser for us and was kind enough to share their story:

After being told that we were unable to conceive on our own, my husband and I were thrilled to prove the doctors wrong! We found out we were pregnant with a baby girl and were over the moon. On May 4th, at my 20 week appointment, we discovered that our little girl has CDH. Instead of the joyous 20 week ultrasound where we see baby girl waving and showing off for the camera, we were ushered into this whirlwind of information. I remember looking at my doctor in shock, it wasn’t until she hugged me and told me that everything was going to be alright that the flood gates opened. As grace would have it, we were able to get an appointment with the Chicago Institute for Fetal Health that very day and thus began our journey. We were given an onslaught of statistics and information that my husband found comforting but that I found daunting. He is a glass half full and on my worst days I am a glass, what glass? We were told that her stomach and intestines and a portion of her liver had migrated into the chest cavity classifying her case as moderate. We were told that cases like this have an 85% survival rate and that this was good news… I saw only the 15% chance that she would not survive. So now here we are at almost 31 weeks. I find myself stopping every few minutes just to make sure I can still feel her and I am trying to mentally and emotionally prepare myself for the future. We decided to call her Lily Katherine, after my husband’s grandmother. We thought it fitting to name her after the strongest and most stubborn woman we have ever met, praying that the name and all of the praying that went behind the decision would somehow speak her own strength into existence. We have met with our team of doctors, our surgeon, neonatologists, maternal fetal medicine and the hospital social worker to establish a birth plan. Even with all of the information in the world, even with the statistics being in our favor, even with one of the best surgeons at our disposal, it has been my faith that has carried me through. In those moments when I find myself crying for the pain that lies in my daughter’s future, I remember that God loved her first. I am surrounded by family and friends. I have created a social media platform for her journey which has allowed me to share with friends all over the country and to connect with others who have also experienced their own CDH journey. Despite the worries and fears, I see God’s fingerprints everywhere. He alone gave us this miracle, even after the doctors told us it was impossible to conceive. He orchestrated our lives so that we would live in Chicago knowing that there are only 3 hospitals that specialize in CDH surgeries, one of which is here. He orchestrated a chance meeting with a father and daughter in Ireland, this daughter as it turns out is a labor and delivery nurse at our hospital. He has given me a peace that surpasses all understanding, even in the midst of the storm. I am thankful for the support I have been given through organizations such as Cherubs and it is for this reason I decided to design a t-shirt through Custom-Ink. These shirts are simple and yet they say so much about the support that we have. Friends and family from all over the country have stepped in to buy shirts to support Lily and in turn to raise funds to donate to Cherubs. All in all we have sold 35 t-shirts and raised a total of $529.13! We are so grateful and cannot wait to see how great the shirts look on everyone when they post selfies and encouraging words on Lily’s Facebook page, Lily’s Story: Blossoming Despite CDH. Even though we would not have chosen this journey, we are thankful for the support we have received while on it. 

With all the hope of a bright future, 

Rebecca Schroeder

Thank you and best wishes to the Schroeder family!

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