Robert’s Story - Congenital Diaphragmatic Hernia (CDH)
Meet Robert Marion Kerbow, born September 29, 2021, at 35 weeks. What can I say about my beautiful baby, except he tends towards the dramatic? During my 30-week growth scan, the tech saw something abnormal. The office called me back the next day for repeat imaging, during which the radiologist told me he initially thought he saw a cyst. However, he said it was growing and changing size, so it might be some form of hernia. He told me my OB needed to send me to a Maternal-Fetal Medicine (MFM) specialist. Thanks to the red tape from my insurance, I was limited in how soon I could be seen and I had to play "mommy, may I?" to try to get in the specialist's door.
Before I could finally have an appointment with the MFM specialist, I went into preterm labor at 33 weeks. I was airlifted from Uvalde to the University Hospital in San Antonio. They were able to stop contractions and while there, I had my level two ultrasound which revealed Robert's Congenital Diaphragmatic Hernia (CDH). Due to my severe idiopathic gastroparesis, controlled by a gastric pacemaker, I could not have an MRI to evaluate the hernia's severity. We were given just a survival rate between 30 to 50%.
My husband and I were devastated. Our insurance changed and I ended up switching all my care to Methodist Children's. Two weeks later, at 35 weeks, I started having severe contractions again and my husband drove me an hour and a half to San Antonio. The medical team decided it would be too risky for the baby and me so they kept us in the hospital even though my labor had stopped. It truly felt like it would be a sit-and-wait situation until my induction, scheduled for October 25, which was nearly four weeks away. But in proper Robert form, he surprised all of us two nights later.
The nursing staff assured me I was not in labor but started IV fluids and Tylenol. I began to vomit uncontrollably and after just two and a half hours, I stood to walk to the bathroom but I felt extreme pelvic pressure and immediately called the nurse. The doctor came and checked and said, "OMG, no idea how this happened, but you are done and baby is coming. Do not push, and if your water breaks before I get back, hit the call button." He was barely out the door as my water broke, and it was clearly meconium stained. They knew they had to hurry and that Robert was in serious trouble. After just 20 minutes of pushing without any pain medication, Robert was born on September 29 at 12:08 am. He was immediately intubated, rushed to the NICU, and put on the oscillator. Thus began his 113-day NICU battle. His hernia was repaired on day 7 of life with his stomach, bowel, spleen, and colon all up in his chest. Everything was looking up until he suffered a pulmonary hypertensive crisis resulting in pulmonary hemorrhage. Due to being a preemie and his grade one brain bleeds, his team did not want to put him on ECMO, so they started him on Flolan. Over the next three weeks, we saw him slowly improve.
On November 2, just a month after his birth, I held Robert for the first time, and then the next day, they surprised me with extubation onto high-flow oxygen. He did great for the next two weeks, but he started having severe reflux and nonstop vomiting to the point he aspirated. He ended up back intubated from November 20 until Thanksgiving day, five days later. He was extubated again and did well until November 30, when they discovered he had a massive PDA. On December 1, he underwent surgery and had it closed. After the procedure, he seemed like a completely different baby. The only thing we needed to do was tackle the reflux. So on December 16, he got his G-tube and Nissan, which saved him. After the procedure, he became so much more comfortable. He was switched to a CPAP machine and they were talking about discharge.
On January 20, 2022, after 113 long days in the NICU, he was discharged home to us on a CPAP of 9 and 5 liters of oxygen. We felt like we were finally out of the woods. However, just four short days later, we were admitted back to PICU and still battling COVID pneumonia. Robert very much loves life. He is a pretty happy-go-lucky guy and blows mommy and daddy away every day with how hard he fights.
2023 Update:
Robert is doing great! He is off daytime oxygen and only needs it at night now. He no longer needs CPAP as well, luckily. He is taking more and more by mouth each day. With all his hard work, we hope he will no longer need his feeding tube soon!
