Meet Clara...

Clara’s mom Stephanie had this to say:

My husband and I went to our 18 week anatomy scan so excited to see new ultrasound pictures of our baby girl, not knowing that our lives were about to change. After the ultrasound, my husband left to pick up our kids from school and I stayed and waited for the doctor to review our scan. We already had three healthy boys, so when the doctor came in the room and stated that our daughter had a very serious birth defect, I was in shock. I honestly don't remember anything the doctor told me that day. My head was spinning and my ears were ringing and I just could not understand what she was telling me. In the week that followed, we had more testing and imaging. We were told our daughter's left sided CDH was very severe. We were told she would likely not survive. We were told to abort. I have never cried so much in my entire life.

My husband soon found some CDH support groups on Facebook and we were able to connect with fellow families. The name Dr. David Kays came up again and again, but he was all the way in Florida. There's no way we were going to uproot our family and move to Florida. Then a CDH mom sent me a recorded presentation by Dr. Kays, describing why his program has such good outcomes. I was filled with so much HOPE! My husband and I watched it together and we knew that we would never forgive ourselves if we didn't give our baby girl the absolute best chance.

At 34 weeks pregnant, my husband moved me into the Ronald McDonald House in St. Petersburg, Florida and then he returned home to our boys. After several ultrasounds and a second MRI, we learned that our daughter was even more severe than we had thought. She had only 11% observed lung volume. Dr. Kays told us the safest thing to do would be to put our daughter, Clara, on ECMO immediately after birth.

At 37 weeks and 3 days, our sweet Clara Grace was born. She was whisked away and connected to ECMO within 15 minutes of birth. Dr. Kays repaired her diaphragm later that day. She was a very sick little girl. After 28 days and some big scares, she was able to come off ECMO. Clara struggled to come off the support of the ventilator. She was intubated for 73 days. Then she struggled to come off CPAP. After meeting with Dr. Kays, we decided to allow Clara the time to continue weaning from CPAP at home. Clara was discharged after 131 days in the hospital, and two weeks later we made the 22 hour drive back home to Wisconsin to join her brothers for the first time!

Clara is the sweetest, happiest baby. She adores her brothers and thinks everything they do is funny. She has come so, so far. She is now officially off CPAP and only on oxygen through nasal cannula! We are so proud of her and everything she has been through.

Clara gave us quite the scare recently when she was rushed to the hospital with difficulty breathing. She was diagnosed with RSV and pneumonia and was really struggling. On the third day of her admission, she took a turn for the worse. She was on the brink of being intubated when she finally was able to stabilize on bipap. Over the next three days she slowly improved enough to come home. During her six day hospital stay, I stayed with Clara and my husband took off work to be there for our boys. We were so grateful to receive the re-hospitalization grant from The CDH Foundation. I have been on a leave of absence from work since February 2022, so we are currently a one-income family of six. My husband has used all of his sick hours, so him taking off those days to care for our older children was an unexpected financial hit. The grant helped us pay for gas to and from the hospital, and food while I was away from home. We are so thankful to have such a strong community rallying behind us.