Noah has a condition so rare he is the only baby in the UK to have been diagnosed with it.
11-month-old Noah from Huddersfield was born in March, 2011 at Calderdale Royal Infirmary. Within two weeks his condition was so severe that he was transferred to Alder Hey hospital in Liverpool for specialist tests.
Here it was discovered that he has a condition called Lanryngomalacia as well a very rare form of Interstitial Lung Disease – Noah is only the 19th baby in the world to be diagnosed with this and the only one in the UK.
Noah endured numerous medical procedures to try to improve his condition, including a tracheostomy to open his airway and was put on a ventilator which he requires at night to help him breathe. Someone with the right training needs to monitor this the whole time to ensure Noah’s airway remains clear and the ventilator attached.
Support from WellChild
Several months after arriving at Alder Hey, where his Mum and Dad, Jill and Colin, stayed with him, the family met WellChild Children’s Nurse Elaine O’Brien who supported them in arranging all the necessary measures to be able to bring Noah home, including training them and carers in using the ventilator. Elaine provided professional guidance and, working closely with the family, managed all aspects of Noah’s move home, including an interim transfer to Leeds General Infirmary.
Jill said: “Elaine spoke to us in a language that we understood and provided amazing practical and emotional support, making sure our voice was heard with all the different health professional and carers involved in getting Noah home.”
During her induction period, new WellChild Nurse, Katie Booth, gradually became more involved in Noah’s care and took responsibility for the momentous task of co-ordinating the multiple different services, agencies and professionals needed to establish the care needed for the family to move back home from the hospital environment where they had lived for nearly a year.
This was a frightening prospect initially for Jill who did not relish having to liaise with a totally new set of people to explain Noah’s situation and make sure every last detail was in place. Fortunately as her WellChild Nurse, Katie was able to take that burden from her and devoted the necessary hours in negotiating and co-ordinating the care Noah needed at their home in Huddersfield.
Jill said: “I cannot speak highly enough of Katie and what she has done for us as a family. The transition home was so much easier under her care and she continues to help us tremendously.”
Noah has now been home for over a month now but Katie remains closely involved with the family to ensure things continue to run smoothly and is working hard to avoid Noah having to return to hospital unnecessarily.
Jill said: “Katie relieves us of many of the practical burdens which might become overwhelming without her support, such as liaising with our GP, community nurses and other professionals and even arranging for ordering and disposal of the medical equipment that Noah requires. It is such a comfort for us that she is on top of everything as well as providing us with huge emotional support.Share your story
I honestly don’t know how we would have managed without Katie and Elaine and the role of the WellChild Nurses. They are worth their weight in gold. The support that they give is unrivalled.Jill, Noah's mum