Ademide was born on the 31st of March 2012 at the University College Hospital. 

He had been diagnosed in-utero with a severe right sided congenital diaphragmatic hernia (CDH) in December 2011. He was given a 10% chance of survival, if he made it to birth. 

His mom underwent FETO surgery at Kings College Hospital to give his lungs a chance to develop. His liver and bowels were in his chest as a result of the hernia. 

After Ademide was born, it was discovered that in addition to the hernia, he was suspected of having Goldenhar syndrome which is diagnosed on clinical presentation, he had bilateral malformed ears and a dermoid cyst in his right eye.

Ademide underwent successful surgery to repair the hernia at Great Ormond Street Hospital when he was a few days old. Shortly after at 10 days he required maximum ventilation and it was suspected that he might be septic. The decision was made to place him on ECMO to give his heart and lungs a chance to rest.

Ademide came off ECMO after 10 days. Shortly after coming off ECMO, Ademide developed abnormal liver functions with his abdomen swelling up. Nonetheless, he recovered enough to be transferred to his local hospital with the view of eventually going home. 

After a few days of being at Watford General Hospital, Ademide went into respiratory distress and had to be transferred to Addenbrookes hospital in Cambridge.

While here Ademide suffered a serious case of bradycardia after being taken off the ventilator and had to be resuscitated with chest compressions. It was also discovered that he had tracheomalacia ( floppiness of the windpipe) and he had to be transferred back to Great Ormond street for further investigations. 

Back at Great Ormond Street, it was discovered that Ademide was not a candidate for tracheal stenting as he had a severe case of trachebronchomalacia. His entire windpipe and bronchii were too floppy to secure a stent. A tracheostomy was placed to give him a chance at breathing independent of a ventilator. 

While at Great Ormond Street it was also discovered that likely as a result of complications from being on ECMO, Ademide had developed bilateral visual and hearing deficits. 

Ademide managed to come off the ventilator but had to be put back on as he struggled to cope continuously without it. Plans were made to bring him home with community support however, once again he had respiratory distress which required ventilation in an ICU setting. 

Doctors at Great Ormond Street re-examined him again only to discover he had a partial anomalous venous drainage. Due to Ademide's small size and the several surgeries he already had, the doctors advised that the PAPVD was inoperable. We were then referred to palliative care.

On August 6 2012, his parents made the decision to take him off life support and on August 7, 2012, he passed away peacefully in his mother's arms. 

Part of his tissue was donated to Great Ormond Street in the hopes that perhaps future research would give some insight into cases like Ademide's. 

The doctors at Great Ormond Street work tirelessly to save many children. 

In addition, they also offer free accomodation and meals to parents whose children are resident in the hospital. 

Please donate whatever you can so that they can continue to support and save lives. 

There is no known cause for CDH and it occurs in 1 of every 5,000 births. Ademide's combination of issues is one that had never been seen by the team at GOSH. 

We are extremely grateful for all they did to help our son. 

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