Carlee Nelson on This Week’s CDH Radio Show

Join us this week as Carlee Nelson shares her daughter’s story, after she was diagnosed with CDH.

Tune in to at 6:00 pm EST, June 14, 2022, to–carlee-nelson.

Listen to archives of the radio show at

A first-time mom and newly engaged, Carlee was going through uncharted territory. She shares, “to be honest, I never really wanted to be pregnant or to be a mom. This was my first pregnancy. Pregnancy to me was incredibly scary. As time went on, I started to get excited. I was wrapping my head around being a mom and becoming a family of three.”

Carlee was getting excited for her doctor’s appointment, excited to see her baby and find out the gender, but that day turned out differently. Carlee shares, “I was actually excited for my doctor’s appointment for a change and to see my baby. But as quickly as I became excited, that excitement just as quickly washed away when the doctor walked in and told me my baby had right sided CDH. I had no idea what CDH was or the severity. I was hearing what he was saying but I couldn’t comprehend the words. It was like it wasn’t real.” 

Carlee’s life would be upturned upon this news. She spent time researching for the best care, getting second opinions and finding support from various outlets. She mentions, “I was given the option to abort River, but I felt like that was giving up and I felt that I wanted to leave this up to River. If she wanted to fight, she would, and I would do everything in my power to support that. I physically would do everything in my power to help her thrive.”

The pregnancy was hard, this was Carlee’s first pregnancy. Carlee shares, “this pregnancy was hard. I imagine any normal pregnancy is. I don’t have any other pregnancy to compare it to but despite 4 amniocenteses’ (3 of which were thoracocentesis to River), so much blood work, ultrasounds weekly, c section, and hours of traveling I would do it a million times over again.”

River would soon be diagnosed with hydrops at 30 weeks on top of her CDH and became sicker and her survival rate was going down. She was scheduled for a stent placement, but the night before the procedure something didn’t feel right to Carlee. After speaking with the nurse, she still didn’t feel like things were normal.

Carlee shares, “I went in the next morning, and it was confirmed I had an amniotic rupture. What went from going into the hospital for an in and out procedure turned into being told I could not leave the hospital or the bed until River was ready to be born. I was 33 weeks and was told they want to get me to 38 weeks. Of course, as time went on River got weaker, her fluid became more abundant and exactly a week after, I was admitted to the hospital, and I was rushed into an emergency C- section.”

Carlee shares, “I will never forget the moment before I went into my c section. Five doctors and several residents sat in my room and wanted to let me know that they have never seen a case like River’s at CHOP. Her prognosis was very poor, and they didn’t expect her to make it past delivery. Eight months of dedication, morning sickness, needles, pain and discomfort for what? I felt defeated. I fell apart. I’ll never forget my husband holding me as I bawled. I kept saying. “I’m not strong enough to do this.” But, he reminded me I was. I made it this far and so did River because I was strong. River was strong too and together we were going to get through the c-section.”

River was determined to fight. The c-section was quick. Carlee shares what she remembers, “I remember the chaplain was in the operating room next to me praying. I was expecting her to step in and quickly baptize River after she was born, before she passed, but that didn’t happen. I laid there helpless asking what was happening. I couldn’t see anything. The doctors said, “She is fighting so hard! She doesn’t want to give up and neither are we.”

In the minutes after River was born, she underwent resuscitation to open heart surgery to place ECMO directly into her heart and so many more medical procedures and treatments. In the end, it just wasn’t enough. Carlee shares, “River was strong and fought for 15 hours and that is longer than anyone expected her to be with us. It was wrong to watch her slowly fade away and not put an end to her struggle, suffering and pain. I held my daughter for the first and last time. Eight months led up to that moment and in that moment, I wish I could have frozen time.” 

When it came time to leave the hospital, it was very hard, and Carlee and her husband felt conflicted. “I didn’t want to leave as all my memories of River were in the hospital. Leaving CHOP, I felt like I would be losing a piece of her as I felt like all I had were the memories in the hospital. It was hard for me and my husband. We were able to leave the hospital in the morning but ended up leaving 8 hours later,” Carlee shares. Most parents leave the hospital, they leave carrying out their baby. Carlee shares, “I walked out hugging a clay molding of my daughters’ foot. This is all I had of her. I held that molding as tight as I could holding back tears, wishing so badly that the foot molding was my baby.” 

When asking Carlee what life is like now, she replied, “when they say grief comes in waves, they were right. Some days it feels like losing River happened yesterday and other days it feels like she left us so long ago. I don’t think there is a right or a wrong way to grieve but do what feels right. I think about her every day. I think about how different my life would be if she was here. It’s still hard to think I will never get the moments of watching her grow. My husband and I don’t have River here physically but she is always in our hearts. My husband and I feel close to her by helping others. We always think there may be a greater meaning to everything we have gone through and if we can help one family in need and lighten their pain and troubles it also lightens our grief as well.”  


Recommended Articles

Translate »