Chrissie’s Story - Congenital Diaphragmatic Hernia (CDH)
On June 29, 2020, we were filled with excitement as we headed to the anatomy scan to find out if we were having a boy or a girl. While the scan was going on, we were so happy to see our baby, but suddenly our radiologist said she needed to call the doctor and we were confused. The doctor came in after some time to tell us that we would have to be referred to the maternal-fetal medicine center. It was then that we learned our baby girl would be born with left-sided Congenital Diaphragmatic Hernia (CDH). My husband asked him what that meant so he provided a printout about it and told us to stay away from Google. We left the center thinking, “it’s just a hernia, no big deal!” We have many people in our family that have had hernias and even my husband has a hiatal hernia. Still, the curious person I am, I turned to Google and was dumbstruck. Finally, on the day of our ultrasound at the MFM clinic, we were confident they would say that it was an error and our baby girl was fine. We were shattered again to hear she did have CDH. We also learned it was on the left side with her stomach, bowel, and spleen up. We were offered termination of the pregnancy, but we refused. Then we were immediately referred for an MRI to check on her heart and get the LHR. Her heart was doing well, but her doctors were unhappy with LHR and asked to consider termination again. Again, we said no. They told us we could have an amniocentesis done and use that to decide on termination. We refused the amniocentesis as well as termination. From there, we continued our biweekly scans until 36 weeks and then switched to weekly scans. Every scan was the same with no good news. We just held on to Jesus and prayed every day.
On November 16, 2020, our daughter Chrissie entered the world at 6:27 pm and gave me a short cry. Immediately, she was taken away and intubated. Four hours after birth, the transport team arrived to take her to the Alberta Children’s Hospital in Calgary. Soon after, she had to be switched to the oscillator. We baptized her on November 18th. She continued to do well and her surgery was planned for November 20th but, the day before, she was not doing well and her surgery was canceled. Thankfully on November 21st, she was able to have surgery to repair her diaphragm using a muscle repair instead of a patch, which was impressive considering the size of the defect. After the repair, we were told her left lung was the size of a penny. As the days went by, she was doing well, the doctors started working towards weaning her support, and she was so close to being extubated when overnight she developed a fever. We learned that she had an infection and sepsis. She was put on antibiotics and her support went back up to where they were—our first setback. In a few days, her culture test returned negative and we all were happy; however, little did we know our second setback was just around the corner.
Over the next few days, fluid began to accumulate in her chest. Her chest was tapped and it was chylothorax. The fluid started to push her lungs and heart again. Her lung started to collapse so a chest tube was inserted. Her feeds were stopped and we had to wait for 14 days. The fluid did not stop after 14 days and we were offered octreotide medication. Because of its side effects, we decided to wait for another seven days and God performed His miracle. The fluid started to reduce and eventually stopped. On January 21, 2021, the chest drain was removed and, on January 23, 2021, she was extubated to BiPAP. From here, everything seemed to have settled down and we felt we were close to home. Her PICC line was removed on January 31st. We started weaning her nitric oxide and all went well until one ppm of nitric. Every time it was turned off, she would desat. It took multiple attempts to stop it. As her nitric was weaned, her pulmonary hypertension got worse, and a trial to high flow oxygen failed miserably. We started a new drug called Bosentan along with Sildenafil for her pulmonary hypertension. She got transferred to the PICU and we were told to expect her to be home on Bipap. Sprints on 2L low flow were started and she did well for some time. As soon as we were about to be transferred out of PICU to be sent home on BiPAP, Chrissie started showing signs of BiPAP intolerance. The team felt she was worsening and had an echo to confirm. Jesus showed them that he was in control of life and miracles. Her PH had improved and was just below her blood pressure. Her x-ray was perfect. Doctors were amazed that she could tolerate high flow now. We were moved out of the PICU on high flow. It took six weeks, but they were able to wean her high flow and she was finally able to go on low flow on May 16th, which happens to be her half birthday. We had a repeat echocardiogram which showed her PH was lowering. Her X-ray and blood gas were all excellent and we heard them mention the word home. Finally, after 189 days in the hospital, we are home!
From being told to consider termination to being the sickest baby in the NICU that they thought would need BiPAP, here we are home with only 0.5 L of oxygen.
From continuous overnight feeds, she has progressed to bolus feeds five times a day and 200ml per feed. Her weight gain has been good and her overall report from the doctors is fantastic. She is still tube fed, but someday she will be off it. Thank you, Jesus. You are the giver of life and in charge of miracles. We are forever grateful to God for saving Chrissie and blessing us with the fantastic team at ACH Calgary for caring for her in the best way and for comforting us along this journey!
