Autumn and Summer’s CDH Story
I found out I was pregnant right before the entire world shut down for a global pandemic. I was shocked and terrified, and just when I couldn't be more shocked, I found out at my seven-week ultrasound that two tiny humans were in my borderline "geriatric" pregnant body. It was too early to know if they were identical, two placentae or one, and one sack or two. I had all these questions. I ended up seeing a maternal-fetal-medicine (MFM) doctor because my twin girls were identical. In fact, they were sharing one placenta. Around 25 weeks, I ended up getting sick with COVID-19. I was the first person in my family and at work who got sick. I was very careful too. So, I'm still unsure how I got it. The unknown about the virus and what could happen to my babies and I was indescribably scary. I ended up going to the ER because I was having shortness of breath, and they ran a CT to rule out pulmonary embolism. Something went wrong with the CT, and it was inconclusive, so I had to stay overnight for monitoring. All the while, the babies were never in distress. We made it through COVID seemingly unscathed. Starting soon after COVID, and I don't know if it's related, the girls were diagnosed with Intrauterine growth restriction (IUGR). Baby B also had a single umbilical artery (SUA). We were at the MFM specialist regularly, weekly at one point. The girls always did great on their non-stress tests. The doctor told me they were small but otherwise healthy. For all those ultrasounds, I had to have at least ten, and no one ever detected the defect.
I was induced at 34 weeks and six days gestation at Holmes Regional Medical Center. I wanted a vaginal birth, so that was what we were going for as both babies were vertex/vertex but had to deliver in an OR case of emergency C-Section. My doctor, Edwin Hayes, had delivered my daughter two years prior and had my full trust in delivery. I got the epidural early on; I prefer to labor without it for as long as I can tolerate, but they were pushing for it early to help progress labor. Plus, I had to have it in case of a C-section. The girls tolerated induction and labor like champs. Autumn (Baby A) was born at 5:34 pm, and Summer (Baby B) at 5:36 pm. I still am shocked I was able to deliver a whole baby, including rupturing the membrane in 2 minutes. I got to hold each of the girls briefly before they were taken to the NICU. They measured small at the MFM, so I was expecting some NICU time. While in recovery in the mother/baby suite, I was eager to see the girls. They had placed oxygen masks on them, and I figured it was because they were so small, 3lbs 15oz (both the same weight!). I assumed that maybe their lungs were a little underdeveloped, although I had received two doses of steroids. I kept asking when I could go down to the NICU, and no one gave me any real answers. Brian, the girl's father, said he heard from one of the nurses that they had a lot of babies coming in, and there was a lot of traffic in there. He leaves to go home and grab a change of clothes and get some food. Not long after he left, one of the neonatologists came into my room with a nurse and said we needed to talk. I nervously laughed and said, "yes, we do," but I could see it in his eyes. Something was wrong. He told me the babies had some respiratory distress after birth and that something looked "off" about their breathing. The doctor told me that they had done chest x-rays and found that they were born with something called Congenital Diaphragmatic Hernia (CDH). He said it was an emergency, and they contacted a higher-level NICU for transport—Winnie Palmer Hospital for Women and Babies in Orlando, Florida. I closed my eyes for what seemed like way too long, opened them, and said, "BOTH of them?" Like just trying to wrap my head around what he was saying. He looked at me with pure disbelief and said they both had it and that he had never seen twins have it. I said, "Well, ok, let's go." That was the last moment of calm.
I called their father and broke down in tears and said something was wrong with the babies. They had to be life flighted to Orlando (which was about an hour and a half from us). He told me it would be okay, but I could hear the fear in his voice. I was finally able to go down to the NICU and see the girls for the first time since the glimpse I had at birth. They were covered in wires and tubes and intubated. They had to be extubated and then re-intubated to be transported because Winnie Palmer had to use their equipment to transport them due to liability reasons. I just stood there watching all these people working on my girls to get them ready to go and sign papers. I literally felt outside my body. Five hours after delivery, they were ready to get on this souped-up ambulance. They couldn't take the helicopter because we had a mild tropical storm. I went back to the room feeling empty. I knew I needed to try and pump, but I was just lying in my bed curled up, talking to my closest friends and family, letting them know what was happening. I remember feeling so awkward because everyone on Facebook was waiting for an update on my sweet twin baby girls, and I wasn't ready to let the world know what was happening, and I wasn't ready to send pics of them all tubed up. I wanted to leave the hospital ASAP to get to my girls. The doctors told me it was best if I didn't google the girls' condition, so for several hours, I didn't. I did ask the nurse to print me some information on it. She printed it and sat down and read some of it to me but never gave me the paper. I felt like things were being hidden from me. I needed more info, so I had to look myself. The survival rate of 65-70% that's a little more than half. I have two babies. Am I going to lose one? Both? My head was spinning. I was up all night. I did force myself to pump a bit, and I'm glad I did. The following day, I was eager to leave and get to Orlando. All my vitals were good, and I was discharged less than 24 hours after my girls were born. My mom came from Texas to be with me for the delivery, but with COVID, she wasn't allowed to be at the hospital. I was so grateful to have her by my side. I was so afraid, but I don't think I ever told anyone how much. Brian, the girls' father, used his vacation to be able to stay with me out there. Walking into the NICU and seeing both girls for the first time since delivery was a moment that will stay with me forever. They were both intubated and kept mildly sedated, so they didn't fight their tubes and wires. Surgery was set for Friday, November 13, 2020 (4 days after birth). The doctor put PICC lines in, and Summer's had to go in the side of her head. The girls were not candidates for ECMO, but their doctors said it was okay because they won't need it. I guess because their lungs were developed enough to breathe on their own.
We stayed in Orlando until their surgery day, and the hospital ended up letting my mother and Brian's mother and father sit in the waiting area for support. We all downloaded this communication app they had that would send surgery updates. Brian and I went upstairs to walk Autumn to surgery. Autumn would go first because they said Summer's defect looked slightly worse. I remember standing in the bright white room with "surgery" in big letters and my last name Vigliotti, up on the wall times two. I stood there praying and believing everything would go smoothly. I remember the night before surgery, reading stories on the Tiny Hero Facebook group, afraid to post in case the girls didn't make it. I wouldn't be able to face the world. I remember reading all the stories about Dr. Kays at JHACH and wanting to postpone surgery the day before and move the girls to St. Petersburg. I hadn't cried much since the first day I learned about their condition, but the thought of 3lb 9oz babies, my babies, shook me. I took all the fear I had and gave it to God. It was my only chance to face what we were about to do. We got updates on the phone for Autumn surgery has started. The message read, "8:26 am. The doctor is now closing the incision, and things are going well." At 8:36 am. A message said, "Autumn is on her way back to the NICU," at 8:54 am. It all happened so fast. Autumn did great! As we were waiting to walk Summer to surgery, Brian decided he had all he could handle and went downstairs. I walked Summer alone. I prayed and hoped her defect wasn't too much worse. They let me kiss her. I didn't know that was allowed. The first time I ever kissed her. I hadn't kissed Autumn. I felt so guilty. I went downstairs to sit with my family, and we got the first message, "Summer's surgery has started, and things are going very well." I was in line to get a smoothie, and about 20-30 min had passed since the first message. And we finally got one, and it said, "meet the surgeon in the surgery waiting room." My heart dropped. I left the smoothie line, and we raced out of the hospital across the street to Arnold Palmer Hospital for Children and into the surgery waiting room. I was so afraid something terrible had happened in her surgery. I am barely breathing at this point. Then the other messages come through. Surgery is going well, closing the incision, etc. Thanks, Technology. We went inside a little room with our surgeon Dr. Marc Levy, who told us that the girls did great and that when he opened Summer up, she had an identical defect to her sister's 2.5x2.5 cm LCDH. The defect was posterior mid to lateral location, and there was stomach, small bowel, and spleen within the hernia sac. It is written exactly the same in both girls' discharge papers. The surgeon was shocked, as were we. First, to see identical twins both with CDH and then the same exact defect. He told us the girls should lead normal lives, play sports, etc. What do you say to the man who saved your children's lives? I just thanked him over and over. A huge weight had been lifted off my shoulders. What a rollercoaster ride! I went from thinking I had lost one of my babies to the best news possible.
The rest of our time in the NICU was spent on feeds. They were extubated on day 7 of life and 3 days after surgery. Autumn needed a little CPAP help at times but no supplemental oxygen. The day after they were extubated, I finally got to hold my little warriors. We spent 57 days at Winnie Palmer Hospital and were discharged on supplemental oxygen for feeds. I wouldn't trade my time there with them for anything in the world. I couldn't stay there every day with them because I had two other kids at home. I would go there on Tuesday, stay until Friday morning, and then return home. I also went back to work on the days I was home to keep myself from sitting and worrying all day. I felt hopeless when I was there with them and guilty when I was away from my other two kids. During our stay, Autumn was also diagnosed with Dandy-Walker Variant, fluid in her cerebellum, and Summer failed her hearing screening and ended up having bilateral hearing loss. I remember thinking if they told me one more thing was wrong with my perfect little angels, I might scream. They are delayed for their age. Now, our biggest obstacles have been reflux, constipation, and slow weight gain—typical CDH stuff. You know, in all my googling (I know, bad) of CDH, we learned that there were only 6 sets of surviving twins in all written history. That makes us seven. We won the rare disease lottery, I guess. Brian did the math, and I think it was something like a 1 in 6 million chance that both twins would have it. Well, here we are, and we are kicking CDH's butt.
