Shameia's Story - Congenital Diaphragmatic Hernia (CDH)

It was September 20 of 2018. It was a very special day that we had looked forward to for a long time. I had requested the day off from work at least a month in advance. Today was the day of our anatomy scan. We had talked a great deal about whether we suspected we would be having a boy or a girl. We were so happy to be pregnant again. One month prior, my wife Lexi and I went for an ultrasound of our tiny baby to see the heartbeat. When the ultrasound technician looked at Lexi’s uterus, she could not find a fetal pole. She left the room and got the OBGYN. The doctor came in and they found that there was indeed a pregnancy, but inside the fallopian tube. Lexi and I left the doctor’s office and were immediately sent to The University of Tennessee Medical Center for emergency surgery to remove the live ectopic pregnancy as well as the right tube.

One month later, here we sat in the same spot getting another ultrasound. Everything with this pregnancy had been normal. The egg implanted in the uterus and growth was looking healthy. Our technician told us we would be having a little girl. We were so happy. It was exactly what we had both hoped for. And then, after a few brief moments of joy, we were immediately crushed again. Like before, our tech left the room and came back with the OBGYN. The doctor told us that our girl’s stomach was next to her heart. She explained that this happened because of a hole or defect in the diaphragm. I will never forget how it felt to walk out of that office with Lexi. We were absolutely devastated. This day was week 18 of our pregnancy.

Our original due date was 20 February 2019. We had no idea that one month prior to that, Lexi would be air lifted out of Knoxville and flown to Vanderbilt in Nashville 3 hours away for severe preeclampsia. On 16 January 2019, Shameia Ji Eun was born. Lexi had been very adamant about having a vaginal delivery. From the time she went in to labor to Shameia entering the world was 4 minutes. I had the greatest honor of my entire life of watching the birth of my daughter just inches away from me. Shameia was immediately taken from Lexi and intubated and given a paralytic. Our room in labor and delivery must have had 25 different staff members in it. They were more than prepared.

For the next 74 days we would live at The Ronald McDonald House in Nashville and the days would be spent scurrying between work, the NICU and our room at RMH. Our team was very concerned about Shameia’s weight. She. Was born right at 35 weeks weighing 3 lbs 13 oz. They wanted for her to grow a little bit before her repair surgery. For the first month of Shameia’s life, she had multiple IV’s in her arms and legs, an arterial line and a breathing tube. One day the nurses couldn’t afford to miss any more spots on her tiny feet, so they used a vein in her head. It is so difficult to see your child like this.

After one month had passed, it was finally time for the big repair. We waited all morning and then the anesthesiologist finally came and spoke with us about what was going to happen in preparation. Then the pediatric surgeon visited us. And the next thing we knew, our little girl was being moved through the NICU to surgery. I have never felt a deeper fear than that day. After about 3 hours had passed, Shameia was out of surgery and I finally got to talk to the surgeon about what had exactly happened and been discovered. Her stomach, spleen and intestines were all in her chest cavity. There was a type B hole. The surgeon was able to do a primary repair. It was a great success. Finally, we felt a sense of progress and assurance that Shameia was going to be ok.

It was about one week later during a routine chest X-ray that our team discovered a blurry object across Shameia’s left lung. We found out later that day that it was some of her intestines. She had reherniated. Several days later, we found ourselves back in the surgical waiting area of the children’s hospital. This time, it took even longer. About 4 hours. Our surgeon later told us that she used a Gortex patch to close the new hole in Shameia’s diaphragm and that the hole was about the diameter of a quarter. The biggest struggle for our little girl after her two repairs was coming off the ventilator. She would make it about 24 hours on CPAP, then her stats would fall too low and she would be reintubated. This cycle repeated 4 times before she finally transitioned to CPAP for about one week, then Vapotherm for about another week, and then finally low flow cannula. On the fourth time, the biggest difference from the other attempts was that Lexi and I insisted that they give Shameia a break.

They waited about 10 days in between extubation attempts and then she finally came off for good. About 3 or 4 days in to low flow, she began feedings through an NG tube. This gradually increased for about one week and then bottle and breast feedings began in addition to the tube feeds. One evening when we checked in at reception to visit our little girl, the receptionist told us that she was being moved! We knew what that meant; she was being moved to the sleep in rooms! This was a huge step for our little girl, as this was to prepare Lexi and I for doing her care so we could finally go home! The sleep in rooms felt like a 5 star hotel room compared to the NICU room we had spent every day and night at for the past 2 months. We had our own bathroom, a pull out couch and a TV. The nurses really only came around every few hours to provide her bottle and to check her stats. At this point in our journey, we knew we were getting close to going home. Shameia was doing great. She had really taken off in the past few weeks.

Getting off the ventilator was the most difficult part of this entire medical process for her. Now that she was finally off, the doctors did several room air trials and Shameia would go about 24 hours before she would get mad and her stats would drop. So low flow oxygen was required. Around the time that we got moved to the sleep in rooms, our doctors began talking more and more about what type of oxygen device Shameia would need to be sent home with. All this talk of going home was making us even more homesick, and I suppose that in some ways, our final week at the NICU was the most difficult because we were so close yet so in the dark about what the future held.

On Friday 29 March 2019, our little girl was discharged from Monroe Carrell Jr. Children’s Hospital on Lexi’s 31rst birthday. Since coming home, Shameia has refused most bottles and will only take the breast. She has grown more in the past week than I feel like she did in the last month we were in the NICU. Her oxygen levels sit in the high 90’s with only room air. She has really taken off. The little girl that we saw on ultrasounds and whose condition caused so many sleepless nights and worry is now a member of our family. We take selfies together and watch TV and burp together. This entire journey allowed my family to see the far better side of people. We met so many incredibly people that we will never, ever forget. Shameia is truly a fighter. All of these kids are.