Violet’s Story - Congenital Diaphragmatic Hernia (CDH)
It was New Year's Day and I asked my husband, "What is your New Year's resolution this year?" "To have another baby," he responded. I laughed it off. We loved him dearly, but our hands were already more than full enough with our 1 ½-year-old. Sure enough, two weeks later, I had a positive pregnancy test.
We had our viability appointment around ten weeks and looked forward to seeing our little bean. Eventually, we went into a room and spoke with the doctor. My heart sank when he pointed to the ultrasound picture and said, "see this thick part at the back of the neck? It's called cystic hygroma. We suspect your child has Turner Syndrome which means your baby is missing an X chromosome." I was sent to the Maternal-Fetal Medicine, only to be given the all-clear after some more scans. It was a relief! The baby was perfectly healthy, according to them. Little did I know, we were still in for a real roller coaster ride.
Fast forward to the anatomy scan at twenty weeks. After the scan, the doctor told me that they wanted me to come back in four weeks for another scan because they could not find all of the organs. For the next four weeks, I was terrified. I thought, "this can't be happening again. Surely it's another mistake." When I came back, they did another ultrasound. Afterward, the doctor told me that our baby's heart was on the right side of the chest and that is why they could not find everything -- situs inversus, a condition where the organs in the body are mirrored from a normal position. Then they send me back to the MFM to confirm the diagnosis.
After the scans at the MFM, I expected them to come back in and give us the all-clear again, as they did in the first trimester, but that moment did not come. Instead, we heard the words, "your baby has Congenital Diaphragmatic Hernia…." The rest of the conversation was a blur that I could not focus on or even hear. I asked for a packet about the diagnosis so I could read it later and let it sink in. From then on, it was week after week and scan after scan of more organs moving up into her chest and then finding a VSD, a hole in her heart. Family and friends supported my son and me, but it felt like the situation just kept getting worse and I wondered when it would end, if ever. However, the journey had barely started.
I decided to give birth at Johns Hopkins All Children's Hospital in St. Petersburg, Florida because there was a specialist there that came highly recommended in the CDH community. I flew out with my son, Theo, and mother-in-law, Theresa. My husband could not be there, so his sibling, Jet, flew in to be my support person during the birth process while Theresa cared for Theo. I checked in to the unit Monday night and after hours and hours of unmedicated labor, my little miracle was born.
Violet Alexandria Traverso was born on September 14, 2021, at 1:31 pm. She was a perfect 6lbs 4oz and 18.9 inches long but did not cry like you expect a baby to do when they're born. She was just so still and beautiful. After intubating her, they wheeled her up to the CDH floor. I didn't get to see her again until later that night.
She was doing so well right after she was born. She had what they call "a honeymoon period" where her body did not realize it was not typical. I figured she would just easily sail right through because her saturations were always great and she needed minimum vent settings. The hole in her heart had closed on its own and there were no signs of any other health conditions. She was diagnosed with a skin condition called cutis marmorata, where she has purple mottling on her arms, legs, and face, but it just affected her appearance and didn't have any other side effects. After a few days, someone must have reminded her that she had CDH because her heart rate and temperature skyrocketed, she was desatting, and they had to bag her. She was obviously uncomfortable. The surgery could not come fast enough. It felt like forever, but on day 7, she had her surgery, and they did not need to use a patch. They were able to use the muscle to repair the hole in her diaphragm and they saw that she had about 40% lung volume. This was lower than what had been expected, but not bad considering how well she was doing with the low ventilation settings.
Weeks went by of physical therapy, x-rays, blood gases, weaning of her medications, and lowering vent settings. She had her good days and some very hard days, but she fought and fought. She was taken off the ventilator after two weeks and I finally got to hold her. Then at three weeks, she got the okay to eat. She has been dubbed "the best eater in the unit" because once they let her start eating, she could never get enough.
On October 8, after 25 days in the hospital, Baby Violet was discharged from the CDH unit with only 0.1 L of oxygen flow. She was officially given the okay to stop oxygen two months later on December 8. On March 14, 2021, she turned 6 months old. She is still a great eater and she has two teeth coming in. She cries when she isn't being held, but when she looks at me, she smiles bigger than I have ever seen before. I am so thankful for that smile every single day.
