Niamh Allen
TrachKid Profile
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Niamh Allen
Niamh and her twin sister Finola were born 14 and a bit weeks early on the 30th of December 2000. They weighed 700g and 720g respectively.
Finola had many of the common preterm complications including a severe bleed to the brain (grade 4) but amazingly after 8 months on the neonatal unit she came home and never looked back - she is now a healthy and extremely normal 2 year old - no lasting consequences.
Niamh's path was not as smooth. When she failed to come off cpap, a bronchoscopy failed to highlight the reason, but a decision was made to perform a tracheostomy anyway, and things looked up. She was at last able to breathe by herself. However she was still oxygen dependant and prolonged ventilation left her with an oral aversion, she also had severe reflux and as a result had a Nissans op and a gastrostomy at 8 months old. She remained prone to chest infections and it wasn't until November 2001 that she came home aged 11months.
The first 10 months at home were extremely difficult - she was constantly ill with either chest infections or had problems with weight loss through diarrhea, and was readmitted every month. (very difficult with Finola and their brother Louis then 3)
We had a couple of failed attempts at decannulation, but it wasn't until November 2002 when Niamh was nearly 2 that a further bronchoscopy revealed Niamh's reliance on the trachy- she had a paralyzed vocal cord. The ENT surgeon reckoned it was probably as a result of a complication of the PDA duct (heart op) that she had at 10 days old.
We have recently been referred to Great Ormond St in London to get a second opinion and are due to have a series of tests there this summer.
Niamh is very delayed in reaching her milestones because of her prolonged ill health and hospitalization - she sits well, and has recently started to stand against furniture and is beginning to pull up. A trial with the Passy-Muir valve failed but she is doing great with her makaton sign language - her first sign was TV!
Niamh is a delightful happy little girl with an infectious laugh - we wouldn't be without her.
I'd love to hear from other parents - particularly anyone who has had to deal with a paralyzed vocal cord. I'm interested also in hearing parents experiences of specialist in the UK.
UPDATE - JANUARY 2006
Niamh is now 5 years old and has started school. She attends mainstream school with her twin Finola. She has progressed so much in all areas. Although we have had many attempts at decannulation at Great Ormond St hospital in London, including an LTR airway reconstruction last summer she does not seem to want to lose the trachy! We go down there yet again this February. Five years on we have more than learned to live with a tracheostomy and now accept that it will come out in its own good time.
Niamhs speech is fantastic, she has recently started to use the speaking valve again, though she is almost as clear without it, I would say she is not behind at all in this area. Her hand function is still behind due to her low muscle tone, but she is learning to read really quickly and can spell her name orally. She is still gastrostomy fed but is making some improvement now that she is older and understands more about the social aspect of eating. She eventually learned to walk with a walking aid and now zips around indoors but is wheelchair depend for longer "walks" outside. She is no longer O2 dependant but unfortunately like so many other of these children remains very prone to serious chest infections and usually has a couple (or three or four!) inpatient stays each winter.
Niamh has a wonderfully positive outlook on life (doesn't think she has any disability!). Above all else I think it is this that has helped her achieve so much.
I am still interested to hear from people via email (particularly those who live in the UK)
Eithne Allen (Niamhs mum)
History
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- Member for
- 25 weeks 5 days
Location
- Country
- United Kingdom
