Violet’s CDH Story

I'm gonna start with Violet's stats; she had severe Left-Congenital Diaphragmatic Hernia (CDH), missing 91% of her diaphragm. She had a CPAM on her left lung, occupying her entire left chest cavity. We were told it played in our favor because it kept some organs "down." She had 35% of her liver, her stomach, spleen, colon, and small bowel inside her chest. She was on ECMO for 14 days and the ventilator for 25. 

She has 1q21 duplication syndrome, which I've had conflicting answers for when asking if it's the cause of her CDH. She's also a deep vein thrombosis survivor! We owe it all to Dr. David Kays and his team.

Our story started like everyone's: pure happiness to bring a new life into this world. We never even considered boy names. We all just KNEW that this baby was a girl. I have three children: Keelie, Cashus, and Violet, who make the third and my CDH'er. My very first ultrasound at 9 weeks with Violet was met with worry from the doctors. They took me to a different room after the ultrasound and said, "Ms. Sterling, we believe your daughter has a CDH. Her stomach seems misplaced, and her heart is displaced."

Honestly, I kept it in mind, but I didn't take it seriously. I asked the doctor, can you fix it while she's inside me? She said no. She said, it's fatal, and you can't fix this. After lots of research that night, I just knew that there was no way my baby had this. The weeks passed, and it came up on my 17-week check-up, and they wanted to follow up with the possibility of CDH. 

The doctor had my gender blood test results, and before I went into ultrasound, she said, do you wanna know what you're having? Then she told me, a baby girl. I was overwhelmed with joy! My happiness was short-lived because a mere 30 minutes later, I was told by doctors here in Springfield, Missouri, that she wouldn't survive birth, and if she did, she would be so severely handicapped mentally and physically that she would have no quality of life. 

I remember the MFM meeting me in the waiting room to give me a phone number in Kansas City. He said, "I'm going to refer you to Kansas. My real referral is that you leave the state to receive termination. Kansas can't see you until you're 24 weeks, and the deadline for termination is 20. Don't waste your time." I couldn't even consider that. 

I was so heartbroken. How and why could this happen to my sweet girl? How would I explain this to her siblings? 

I started researching, and my research led me to Tiny Hero, where I was met with parents who faced a diagnosis exactly of Violet's severity and their babies' lived. Information on doctors who could help us, 90% and higher survival rates! I felt so much hope and fear at the same time. That era of life is such a blur. There were no tear-free days, and I read every survivor's story with eyes filled with tears and a heart filled with hope. I started noticing a name in many of the survivors' stories, Dr. Kays. I made a post, and parents immediately flooded me with support and guided me to St. Pete to be under Dr. Kays's care.  

Joy, one of Dr. Kay's team members, had someone reach out to me to contact her. Although I was filled with so much doubt in myself that I could make that move to Florida, I did reach out to her. I thank God every day for Joy because when I got off the phone with her, I knew I was going to make it to Florida no matter what. She filled me with so much hope for the future, and finally, I could picture a life with Violet. 

I had to start navigating the journey, and I had to do my part, which was no easy task. I owned my own plant nursery at the time, but ultimately, I lost that and closed up shop because it became too strenuous. 

I'm a single mother, and my business keeps the bills paid. I am low-income. It's embarrassing to say that, but I want to give other low-income families hope that they, too, can relocate. With help from places like Angel Wings for flights and Tiny Hero for the relocation grant, I was able to make every flight to St. Pete. With the relocation grant, I used it toward my bills while I was away from home. 

At 31 weeks, I lost my mucus plug, and it scared me, so I called the Ronald McDonald house and asked if they could get me in early. They said they could, and I flew to Florida the next day. That night was the last time I would see my two older kids for 5 months. I relocated at 31 weeks, and I was there waiting to have Violet LONGER than she was actually inpatient after she was born! 

I had polyhydramnios during my entire pregnancy. It was so rough that I opted out of any treatment for it. Violet managed to hang out in there until her scheduled induction date! I was 5 cm dilated when I went in at 37 weeks to be induced.

Violet was born on February 27th, weighing in at a whopping 7 lbs 10 oz! She was the biggest baby on the whole CDH floor for an entire 7 days. Until our beautiful friend Jasper was born. He weighed in at a whopping 7 lbs 15 oz, taking the title from Violet when she was born. She didn't make a sound. She just looked around and then locked eyes with me. Everyone was quiet as they cut her cord and rushed her to be intubated. Before they took her to the CDH unit, they stopped next to me and let me say hello to her. Dr. Kays told me as he followed them closely, "I'm gonna take care of her," and I cry just thinking about that moment. I shook his hand and thanked him, and off they went. 

She was almost able to stabilize on her own, but on day two, Dr. Kays took me to the side and explained she needed some extra help. She needed to be placed on ECMO. He explained she would be placed on ECMO and have her surgery the next day. He introduced me to her surgeon and one of my personal favorites, Dr. Jason Smither. He let me know Dr. Smithers would be doing her surgery alone, and I had nothing to worry about because he's one of the best and his partner. 

I was never uncomfortable one time with a decision Dr. Kays made. He kept me well-informed, well-educated, and at ease the entire journey. I knew when I met Dr. Kays he was going to save my baby. I knew when I met Dr. Smithers that he would fix her. I never doubted that. Dr. Smithers is such a kind man. Both of these doctors are celebrated in our home! 

On day three, Violet had her repair, and it lasted around 4 hours; along with her repair, she also had to have the removal of her CPAM! A gortex patch was placed, and it was the size of my palm. After the repair, it was smooth sailing until she developed deep vein thrombosis, which presented itself as spider-web-like bruising. It was controlled by Lovenox, which I had to give her after we were released from the hospital in shot form for 6 weeks. It's so hard to give your tiny baby shots, it's heartbreaking. 

She was inpatient for a total of 74 days; learning to eat was hard because of reflux, but that was controlled with prevacid and gabapentin. She was also released with .1 of oxygen. She was off oxygen and all medications by the age of 5 months. 

Violet is thriving. She's cognitively and physically tested three months in advance! She loves food, playing with toys, and coasting furniture! She is now one years old, and I'm completely blown away by her! 

She has completed my tiny family. 

I'd like to thank everyone who helped us along the way!  Especially Tiny Hero. I don't know if I would have found Dr. Kays had I not found Tiny Hero! I hope Violet can bring hope to families just like mine. 

Hold onto your faith, relocation is possible! There's lots of help out there!