
OUR MISSION
Ronnies fight was created to support and spread awareness for children and families within Minnesota battling Congenital Diaphragmatic Hernia.
WHAT IS CDH?
Diaphragmatic hernia is a birth defect where there is a hole in the diaphragm (the large muscle that separates the chest from the abdomen). Organs in the abdomen (such as intestines, stomach, and liver) can move through the hole in the diaphragm and upwards into a baby’s chest. When an organ pushes through the hole, it is called a hernia. A diaphragmatic hernia can prevent the baby’s lungs from developing completely, causing breathing difficulties for the baby at birth.
WHO WE ARE/WHAT WE DO
Ronnie’s Fight for CDH is a non-profit organization started by Ronnie’s family. This organization was founded to spread awareness about Congenital Diaphragmatic Hernia (CDH), specifically the story about our son, Ronnie. We will be hosting events to help raise awareness, along with supporting and providing for families in need, during their own fight against CDH. We hope that we will be able to raise enough money to not only provide support for the families, but also to support the hospitals within Minnesota that take care of CDH babies, kids, and families. 1 in 33 babies are born with a birth defect and 1 in 2500 babies are born with CDH (which is just as common as Cystic Fibrosis). We aim to provide CDH families with support and resources within Minnesota.
RONNIES STORY
The fight for Ronnie against CDH started early, as I (Ronnie's Mother) had a really tough pregnancy developing Hyperemesis at 7 weeks and lasting my entire pregnancy. Around 20 weeks, I started feeling a little better, but then we received the bad news. As soon as the ultrasound technician said that the doctor would be coming into the room, I knew something was wrong. My heart sank into my stomach. The doctor said his stomach and possibly more organs were in his chest. Due to the organ(s) being in his chest, his heart and lung were being squished and shifted. The doctor said that they believed it was because he had a hole in his diaphragm also known as congenital diaphragmatic hernia (CDH). The doctor continued to talk, but my brain was racing, and I don’t remember the rest of the conversation. I remember they had us talk to a genetic counselor, who wanted to do an amniocentesis, and talked to us about termination. I remember us feeling so lost, and I couldn’t stop crying. I felt like I did this to him. Like this was my fault, but it wasn’t. We were able to keep fighting for 36 weeks. We tried to induce to deliver naturally because we were told that was best for the baby, but my blood pressure became dangerously high. We ended up having an emergency cesarean section and Ronnie was born! He was bright red, and he made the quickest whimper. He came out fighting and weighted 7lbs 5oz. I cried and told my husband to check on him. From that point on, my husband stayed with him, and I was told that I could see him a few hours later. The NICU team was blown away at how amazing he was doing. At one point, the doctors were unsure if he truly had a Congenital Diaphragmatic Hernia or if was it something else.
The next day, he took a turn for the worst, and we were scared out of our minds. The doctors didn’t know what was going on. There were so many x-rays because it looked like CDH, but didn’t at the same time. The NICU staff was constantly changing and adjusting medications to make him more comfortable. Finally, they decided it was CDH and that Ronnie would need surgery. He continued to need more and more support. He switched from a regular ventilator to an oscillating ventilator within a few days. At that point, the doctors said he wouldn’t be able to have surgery because of being on the oscillating ventilator. (It causes the whole body to shake, making it hard to do surgery). After 4-5 days, they decided to switch back to the regular ventilator and schedule his surgery. He had his surgery at 5 days old. It lasted around 8 or 9 hours, and we were going crazy! Even after surgery, there were a bunch of ups and downs. There was extubating and re-intubating, CPAP, off and on oxygen, change in medications, TPN, PICC lines, feeding tubes, and monitors. He spent 5 weeks in the NICU and made it home the night before Christmas. We have had a few Emergency Room visits, Urgent Care visits, so many specialist and doctors appointments, and hospital stays after discharge. And he's still fighting!