Violet’s CDH Story
We discovered that Violet had congenital diaphragmatic hernia (CDH) and decided to undergo an amniocentesis at 20 weeks. She was categorized as moderate risk. Violet was born at Darlington Memorial Hospital, a non-specialist facility, at 37 weeks, despite a planned induction set for 39 weeks at the Royal Victoria Infirmary (RVI) in Newcastle. After her birth, she was stabilized and transferred to RVI, where she progressively required more assistance. The following day, she was transferred to Freemans Hospital in Newcastle and placed on ECMO (extracorporeal membrane oxygenation). On day five, while on ECMO, she underwent surgery to repair the hernia with a patch (October 2022).
After a week on ECMO, she was taken off and managed to remain stable. She then continued her recovery journey, gradually weaning off oxygen and starting to take feeds. However, when they attempted to reduce her breathing support from high flow to low flow, a chest X-ray was performed and revealed a recurrence of her condition. Surgery was conducted the following day when she was one and a half months old, where a new patch was placed over the old one (December 2022).
After a brief stay at our local hospital, the University of Durham Hospital, to assist in transitioning her to oral feeding, she came home a month later on low-flow oxygen and feeding orally. At nine months, during a follow-up X-ray, another recurrence was detected (July 2023). Surgery was performed that same week to address the issue by removing the two previous patches and placing a new one.
When she was nearly two years old, she was thriving and had multiple follow-ups, all of which showed everything to be normal. Unfortunately, another X-ray and CT scan revealed another recurrence (July 2024).
After consulting with abdominal and plastic surgeons, Violet underwent her final corrective surgery in September 2024. During this procedure, the latissimus dorsi muscle from her back was used, and part of her 10th rib was removed. The muscle was then repositioned to the front of her abdomen, where it functions as a new diaphragm. Because it is a living tissue with its own blood supply, it is able to grow with her.
Since her fourth repair, she has not experienced any issues and has recovered exceptionally well. We are incredibly proud of her. She has gone through so much and showed how strong she really is!
