Noah’s CDH Story

Noah John Bell was born on October 27, 2024. He was born at Royal Derby Hospital, but unfortunately was diagnosed with an undetected Congenital Diaphragmatic Hernia (CDH). We had no idea during pregnancy about his condition, so it was a huge shock to find this out after he was born. 

His bowel had travelled into his chest cavity and was squashing his left lung, as well as putting pressure on his heart. He was then transferred to Nottingham QMC for the night.

He was supposed to stay here for treatment, but got progressively worse overnight. The nurses decided he needed ECMO, a type of heart/lung bypass that goes into his neck.

The ECMO team transferred him to Leicester Royal Infirmary, where he was treated for four weeks. He underwent a big and scary operation to repair the hernia and to move his heart and bowel back into place.

As his bowels were absent from his stomach, the stomach had shrunk, meaning the bowel would have to be gradually dropped back into the body using a bag hung above him and letting gravity do the rest until he was ready to be stitched back up. We spent the next 4 weeks praying his little lung would repair itself.

By some miracle, his little lung did start to grow, so eventually he got transferred to Nottingham QMC to wean him off all of his medications and get him to breathe on his own.

Altogether, we spent 8 weeks living in 3 different hospitals, praying our baby boy would survive this condition. After 8 weeks, we finally had him home just before Christmas. He is now a very happy and healthy little boy.

Without the help of all the incredible nurses, surgeons, doctors, ECMO specialists, and the Heart Link Charity, we wouldn’t be where we are now. We will always be eternally grateful.