Lily-Grace Knight
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Lily-Grace Knight was born 13 December 2002. I had a water birth, fully drug free and every thing was going swimmingly until the moment Lily was born. I remember holding her for those first precious moments and then it came apparent that she was having trouble breathing. She was whisked away, with no one being able to tell us what the problem was and with us being unable to see her for a full 3 hours. I remember in particular breaking down at one point as I thought she had died and that the doctors would be walking in and confirming it to me any time soon. After a week on a ventilator at our local hospital, and doctors being unable to diagnose why Lily could not breath for herself, she was transferred to St Mary's Hospital, Paddington, London. There it was explained that Lily had Congenital Bilateral Vocal Chord Palsy and a Tracheostomy was fitted so she could breath for herself.
Whilst trying to get our heads around this rare condition, my partner Paul and myself have adapted easily to Lily's trachy (she makes it so easy as she is so so very beautiful) and have been lucky enough to have the support of our fantastic families and friends.
Lily was scoped again 5th November 03 to see if there was any improvement and unfortunately nothing has changed. Paul and I both agree that we wouldn't change her for the world, she is
a hilarious, amazing little character, who I admire so much for what she has been through, but it is disheartening for us that there has been no improvement of any kind. Oh well, we live and hope, and we will just continue to enjoy our special little
girl just exactly as she is, and if she has to have her trachy permanently then we'll make sure we'll be here for her to give her all the love and support she needs, and more.
Kind regards,
Clair Simpson
