The Blame Game
As parents, we want nothing but the best for our children. When you get the official results of a positive pregnancy test, your spirit soars, your mind jumbles, and all you can think of is that little baby becoming a part of your life. But once we receive that pesky CDH diagnosis — those three letters change everything. We are here to remind you: CDH is NOT your fault!
When I first got the diagnosis, I wondered where I went wrong. I wanted to know if it was a medication or vitamin I took or didn’t take. It was my first question when I spoke to the CDH team. I chose to have the amniocentesis done to help me find some answers, but the report came back all clear, like many families. But to those of you who had something come up, the words still stand: it is NOT your fault!
We didn’t have a baby hoping they would be born with this condition. It just happened. The diaphragm forms around eight weeks, so some of us might not have even known we were pregnant then! The shock of such a diagnosis can cause anyone to spiral, so I hope this helps get you out of that spiral. According to the latest CDC statistics, CDH occurs about once every 3,600 pregnancies. That isn’t a lot, but you are NOT alone! We are all here with you. Each of us has sat in that room, received the diagnosis, and felt every emotion that comes with it. Here are some words from mothers who have been there.
Elle — Samuel’s Mom
“I was devastated when I first learned about Samuel’s diagnosis. We had already been through three losses that year, and I remember feeling like this was another way my body had failed. As a parent, one of our primary jobs is to keep our kids safe, and I felt completely powerless because I couldn’t do that. Leaving the office that day, it felt like we needed to prepare for another loss. Soon after, I found Tiny Hero’s CDH support group. I began searching old posts and following current CDH babies’ journeys. For the first time, I had hope that CDH wasn’t a death sentence and that it was something my baby could overcome. I also felt encouraged when we had our first MFM appointment because the doctor told me that most of the time in CDH, there is no genetic link, and it is just a fluke of development. It was also reassuring to have an older son with no congenital conditions. For the rest of my pregnancy, I realized my body was keeping him safe while he was inside my belly, and I cherished every moment with him. I don’t know why these babies must be handed such a tough road, but I know it is not anyone’s fault. They are the strongest little ones you will ever know, and they defy all odds against them time and time again.”
Elle spent 90 days with her son Samuel at Children’s Mercy in Kansas City, Missouri.
Jordan — Harper’s mom
“We found out that our daughter Harper had RCDH when I was 29 weeks pregnant. It was the worst news to hear, as we had no idea what this diagnosis was. Googling it gave us so much fear, as there is not enough information out there, and the information on Google was pretty outdated. I felt like it was all my fault, that I had something to do with this birth defect my daughter would have. During the last 11 weeks of my pregnancy, I cried every day, fearful of what the outcome would be once Harper was born and the journey ahead of us.
I remember the day I found Tiny Hero’s Facebook group and immediately had support. It was so nice to hear others’ stories and words of wisdom. I followed many babies’ journeys along the way, asked questions, and did my research, especially through the Tiny Hero support group and website. The positivity in this community and success stories gave us hope that Harper would be okay.
Fast forward to today: Harper is almost one and a true miracle! I wish I could go back in time and tell myself it would be okay and not to blame myself for this diagnosis. So many of us have gone through and are currently going through the same thing. I found so much comfort in knowing I wasn’t alone. My advice for anyone going through this is to seek support from others, especially in the CDH community. So many resources and amazing families are always available to talk and offer information.”
Jordan spent 45 days with her daughter Harper at the University of Rochester in Rochester, New York.
Aimee — Drake’s mom
“To understand our story, we have to go back to the beginning of it for just a minute. We were done having kids, like done and done! I was turning 40, our oldest had just turned 14, and we had recently moved across the country. We were done. Approximately six weeks after we moved, I found out I was pregnant. I was so excited and scared because, like I said, we were done! But we were elated to welcome a new baby into our lives. Because of my age, I was already in the high-risk category, and then we added twins to the mix — I guess we like to do things a little extra. It was at my 17-week scan that we found out one of our babies had CDH. I remember sitting in the high-risk doctor’s office by myself, getting my monthly ultrasound, when the ultrasound tech somewhat abruptly left the room and said the doctor would be in shortly. It was weird, not like any of the previous scans. I waited almost 20 minutes in the room by myself, growing increasingly worried about what was happening. It was then the doctor came in and explained to me that one of the babies had CDH.
What in the world is CDH!?! This was the most terrifying thing ever. Something was wrong, and I didn’t understand what it was. During this time, the doctor also explained to me that there was a 50/50 chance of survival. He said his survival all depends on how severe it is and the quality of care he gets. Then there was the option to terminate, but that was not an option our family was willing to consider.
It was at this time that I went through a lot of different emotions. I cried. A lot! I was so scared for my baby! I didn’t know what was happening and felt like maybe it was because I was older that it caused a higher risk for developmental issues. I asked the doctor if there was anything I could do. “Can I fix this? Did I do this?” And the answer was always “NO!” Nothing I could do would change the diagnosis. Nothing I did caused the diagnosis. But I still wasn’t okay with this answer. I am a woman of faith, and this is where I had to turn my baby and his condition over to the Lord. I prayed and prayed until I found my peace. I knew in my heart he would be okay, and I believed it with everything I had. I went through the remainder of my pregnancy with this mentality, and it helped me get through the hard doctors' appointments and the fears of what was to come. I will also say that the support from Dr. Harting at the Fetal Clinic in Houston was also a huge supporter and encourager. He was always honest and very clear with me about what to expect. After my son was born, there were days that I had excruciating pain mentally, and I couldn’t stand what was happening to my baby. The fear overcame my spirit and put me into an emotional tailspin. When this happened, Dr. Harting made a very intentional trip to communicate with me and reassure me.
The most important thing I want all parents expecting a CDH baby to know is that CDH is not the end. It is easy to blame ourselves, but it is NOT your fault. It is not anyone’s fault. It just is. Find strength in adversity and reinforce positivity. Especially for moms carrying CDH babies, the one thing you CAN do to help your baby is reduce stress, remain calm, and be positive. All of these things will help your little one in the end.”
Aimee spent 68 days with her son Drake at Children’s Memorial Hermann in Houston, Texas.
Ally — Jaxson & Adelyn’s Mom
“It’s not your fault,” he kept reassuring me. How was my husband so confident that I didn’t do something to cause CDH in not only one but two of my kids? How was he so confident that the woman who was helping bring his children to this world wasn’t the culprit of their birth defect?
The words continued to echo in my mind for weeks until our children’s pediatric surgeon sat me down and echoed that same sentiment to me: “I want to start off by reassuring you that you did absolutely nothing to cause this.” All of a sudden, a weight was lifted off my shoulders. Sure, the waves of doubt and self-reflection have spontaneously led me back to the feelings of guilt, but they no longer drown me. You see, it’s not a linear process as you grieve all the ways your pregnancy and birth story should have been. They’re filled with ups and downs, questions, answers, and battling each side of them all. In my own healing process, right when I had begun to heal from our first CDH diagnosis, we were pregnant with our third child and receiving our second CDH diagnosis. I was immediately brought right back to blaming myself for this. I wanted to focus so badly on what I could have done better or what I could have avoided to ensure a healthy baby on delivery day. I realized that this grieving process and the questions I had were normal. Even nine years later, I sometimes find myself riding these waves of doubt. To keep myself from drowning, I look at the two kids in front of me and remind myself that nothing in life is guaranteed. There are parents out there who have children with healthy and smooth beginnings and are given diagnoses later in life. I remind myself that the fight to give our children the healthiest and best life is much stronger than any birth defect or diagnosis that first tried to bring us down. I remind myself that these children look at me with love and gratitude and have not once thought I was to blame.
Riding the waves of grief instead of fighting the current has allowed my heart and mind to go through a necessary process of healing. These waves have brought me to a place where I can confidently say out loud, “It’s not my fault.”
Ally’s son Jaxon spent 13 days on ECMO and 92 days in UF Shands, and Adelyn spent 62 days in Johns Hopkins All Children’s Hospital.
You are NOT alone!
Each of us has been where you are. We have all felt that awful despair when getting that diagnosis. We all know these kids are Tiny Heroes! I hope you realize that you are stronger than you realize, wiser than you seem, and worth every ounce of encouragement.
When you find yourself down, please know feeling down is alright. There is no right way to handle the news. You're doing your best — and that is all anyone can ask of you. I hope you can look at yourself in the mirror and tell yourself, "I am strong, I am worth it, and my body is amazing." You did nothing to cause CDH. I know I didn’t, and I know you didn’t either. If you need someone to talk to, we are here to listen. You are never alone when you are in the Tiny Hero family!
Elizabeth, Tiny Hero’s Community Manager, and her son Landon spent 7 days on ECMO and 31 days at Children’s Memorial Hermann in Houston, Texas. To learn more about Landon’s journey, check out his CDH story here.
