Introducing Miss Amelie

Miss Amelie Kiki

Amelie Kiki was born on the 9th September 2010 in Holles St Maternity Hospital Dublin under the care of the Fetal Assessment Unit. She came into the world by emergency c-section at 35 weeks gestation after a woeful pregnancy that involved Rhesus disease and intrauterine transfusions. You see Amelie would have been our fourth baby, her older sisters Scarlett born in 2004 and Grace born in 2006 were delivered after very uneventful pregnancies. However in 2009 a little boy called Liam was supposed to be joining us but he died at 34 weeks due to an unexplained stillbirth and while giving birth to him our bloods mixed and the anti-d didn't work causing me to contract antibodies. So Amelie was our rainbow baby, the light of our lives, a new reason to smile. She was progressing nicely until about 8 months when we noticed that she wasn't bearing any weight on her legs, she wasn't making much effort to play with toys but she was really good with her words and was forming full sentences like "Spooky get down" and mimicking songs. But around October 2011 we noticed she was self harming more, to the point where she caused impitigo on her hand. Her daddy Stephen is a Special Needs Assistant in a Special school, and he had become increasingly concerned that what she was doing wasn't normal, her had even mentioned Retts back then but we all dismissed it. However by Christmas we knew something was wrong, she had stopped waving and saying goodbye, she lacked interest in any of her toys, pets, sisters and us. I went to her developmental doctor with my concerns in February when she was making no attempt at pulling to stand. She too shared our concerns but thought it may be Autism. She contacted Dr. Nick our pediatrician who saw us over the Easter break rather than put us on the wait list, he ordered bloods and an MRI of the brain to be done, he told us that he had concerns with her head growth and mentioned Retts. We were dumbfounded, he told us he wouldn't contact us before September if everything was ok but we got the phone call on the 3rd July 2012 that he wanted to see us. So on the 4th July 2012 we walked into Cavan General Hospital and again we received life changing news, our baby had Retts Syndrome and there was nothing that we could do to help her....................