Leah’s Story - Congenital Diaphragmatic Hernia (CDH)

Our wee girl was diagnosed with LCDH at 17-weeks of pregnancy. Her stomach was spotted in the chest area during our private gender reveal scan. The heart was also pushed to the right. In the appointments to follow, we were told she was likely to be a severe case as it was found so early. Not long after diagnosis, the bowels herniated. LHR was 59%, and she was given a 50% chance of survival. Our hearts were in our mouths in every appointment, waiting for the liver to herniate, but thankfully it remained where it belonged. We refused all testing and the FETO procedure as we believed nothing would change our situation or decisions for our baby girl! But in every appointment, they always prepared us for the worst, so I always came out so deflated and had to try to pick myself up again!

She was born by C-section at 38+5 due to my pre-eclampsia weighing 8lb 13oz. Small whimper at birth and quickly whisked away to be intubated. She was stabilized very quickly and remained stable without much intervention before her surgery on day 4 (it would have been day 2 only for the weekend). Her stomach, bowels, and spleen were moved back down, and the diaphragm was repaired with muscle during the surgery. They told us to prepare for deterioration after surgery in the first few days, but she improved immensely each day. Also, there were no signs of hypertension. She was extubated on day 7 and moved to the ward on day 13. On day 28, she went home with a feeding tube which was removed the next day.

Leah Faith is now 14 weeks old and thriving. She weighs 14 lbs and loves her bottles! She is the most content, alert and happy wee girl! We appreciate every single minute with her. She is perfect, and people are shocked when they learn her story as she doesn't look like she was ever sick. Her only ongoing issue is her reflux which caused a choking incident recently, but she hardly complains about anything! Our little miracle after 2 miscarriages!

Hang in there, mommies! Our babies are so strong and amazing! Where there is hope, there is faith, and where there is faith, miracles happen!

Her godmother made this video for her to document her journey. I cry every time I watch it! I pray so hard that all families going through this get our happy ending!