Keiron's story: Citrullinaemia

Keiron ' s story: Citrullinaemia

Hi, I'm Tori. My son, Keiron, lost his life to the complications of Citrullinaemia in April 2007.

He was a beautiful healthy bouncing baby boy... or so we thought. He passed all his tests in the hospital with flying colours and we were sent home the next day to begin our journey as a new family.

Sadly, in the next hours Keiron became very unwell. Despite making a number of calls through the night and the next morning to the midwives, who assured me time and time again that he was crying because he's a baby, I knew in my heart that something wasn 't right. So I took him to the hospital regardless. Our nightmare soon began. Keiron was diagnosed with Citrullinaemia, and although he fought so hard, he sadly passed away at 17 days old in my arms after being taken off his life support machine.

Keiron didn't die of Citrullinaemia, he died because of the complications of it, by ammonia levels getting so high in his blood he was brain damaged. After surviving a dialasis machine to replace his poisoned blood and spending 17days fighting this evil disorder, he was declared brain dead. It was recommended that we let him die peacefully in my arms rather than die hooked up to a machine that would eventually flat line.

I hate that this happened to him.

I hate that we didn't know that he had this disorder and that he potentially could have lived a normal, healthy life, had we have known. Had we have had genetic testing we could have saved his life by operating on him and giving him the medication that he needed . Had we have been prepared for his illness, we could have prevented the damage from happening at all!

After Keiron had survived the dialasis machine, he woke up and breathed all by himself. He cried, filled nappys and responded to our voices as if he 'd never been poorly!! He was given a sugar diet and fluids and we were sent to a different ward of the hospital where we spent the night with him, expecting him to recover and be able to come home with us.

The ICU department staff were amazing. They were helpful and empathetic the whole time with myself and my family but unfortunately they didn 't know about Citrullinaemia.

The consultants decided that they would slowly introduce protein again. This sent Keiron into a seizure the same evening and he became unresponsive. He was rushed back to the ICU and put back onto the life support machine. He never recovered. He could have had the operation and medication before they gave him the protein again. He could be alive now. I will never understand why this happened. But it did, and if I can be a voice that helps this not happen to other families, then I will do what ever i can to help.