Butterfly Wishes Network | Kaddeisha's Story

Kaddeisha's Story

August 22, 2013  •  2 Comments

Meet Kaddeisha 

Kaddeisha has CROMO 9 and 16 abnormalities and is blind, has hearing impairment, brain abnormalities, global development delay, seizures and and a tracheostomy.

Kaddeisha's Mummy says, "At my 20 week scan, they could not see any kidneys, I was sent to Kings College Hospital where they diagnosed Potters Syndrome which is not compatible with life and offered several terminations but we just said, "We are not God, we do not make life, so we should not take a life". We were then told Kaddeisha would be stillborn or die seconds after birth as low amniotic fluid meant lungs would not develop and obviously no kidney.

When Kaddeisha was born, we were left to spend quality time with her as they thought she was going to die however after several hours she was becoming more pink and decision was made to send her from local hospital to London for testing. They found she did have one kidney but very small so creatine levels were extremely high they said poor outcome and also she had four holes in her heart. Also cleft palette which is still not repaired.

Kaddeisha was a fighter, came home, and was doing well but at 7 weeks she got a chest infection was rushed to intensive care. She recovered, however, weeks later stopped breathing whilst in hospital with another bad chest and was rushed to London intensive care. They found that she had hole in her bowel and ecoli. We were close to losing her again and that Christmas Eve she had half her bowel removed and another 3 months hospital. Whilst in hospital she started having seizures; the MRI showed severe brain abnormalities which explained the seizures and development delay.

Kaddeisha was the registered blind and giving her first little hearing aids. She was in and out hospital all the time for the first 2 years. We practically lived there. In November 2011 Kaddeisha was given a tracheostomy to stop the need for ventilation so much and they found she had severe tracheomalacia and broncomalacia. 

Kaddeisha loves her big brother because he is very noisy lol she also loves vibrating toys and singing songs. Favourite has to be her time in her sensory tent. She loves her disco ball, vibrating pillow and chimes.

Kaddeisha spends lots of time with her loving family, we do daily physio through play and lots of stimulation for her such as play in her sensory tent. She has daily meds and she needs regular suctioning. Kaddeisha does not take anything orally it is all through a gastrostomy which is a tube in her tummy. We have a nurse in 4 nights a week to help with care as Kaddeisha needs someone with her 24/7 because of the tracheostomy. Kaddeisha is such a very happy little girl, today is her 4th birthday, never thought my little girl would be 4 and starting school this September so so proud my little fighter".

Thank you to Julia Hope from http://www.julialouisehopephotography.com/  https://www.facebook.com/Juxhope for the beautiful pictures and to Kaddeisha's family for sharing her story. 




Julia Hope(non-registered)
I had the greatest of pleasures meeting with Kaddeisha, her older brother and parents. It was a truly humbling experience to meet such a lovely family. We booked a suitable date when Mohammad would be off school, on the understanding that should Kaddeisha deteriorate at all, we would bring the session closer. I found it very helpful to meet with the family first so that I could best understand Kaddeisha and her needs. The day of the family portrait session arrived and Kaddeisha was recovering from yet another chest infection, requiring fluid draining from her tracheotomy every 10-15mins. My Assistant had a cold so had to stay away as its so important that these youngsters are not exposed to any more germs than necessary. I had discussed clothing and so on at our Pre-consultation meeting and so it was easier to know what to take with me.
Kaddeisha is blind, unable to sit or stand and has no control over her body movements. She cannot speak, and yet she can partially hear which meant she adored listening to Daddy's Music which we placed close to her ear. Dad took Mohammad for a long run around the park prior to my arrival, so he was easy to please. Kaddeisha loved the breeze that came through the open window where I had placed their sofa to make use of the beautiful natural light. The weather was warm and sunny with a gentle breeze, so going outside I captured many photographs of Kaddeisha smiling (due to sensory feel of the breeze). I felt highly privileged to be recording such a beautiful family and know how much laughter there was. Even though Kaddeisha has no understanding of life around her, when I helped mummy to dress her in a stretchy top and petti skirt, Kaddeisha really seemed to love it... Mummy was overwhelmed with joy at seeing her beautiful daughter looking so pretty, and called her Mum to come and see. We don't just create memories... We give an experience that takes away the usual everyday routines for families like Kaddeisha's, and I can't wait to photograph my next little butterfly!!
Ali Poulton(non-registered)
Such a beautiful, strong, fighter girl! Well done Kaddeisha. Enjoy school :)

Gorgeous photos Julia. x
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