Date Of Birth: August 8th, 2007

Illness: Turners Syndrome

 BIOGRAPHY

Carly was born a ‘small for dates’ baby at 37weeks 5 days.

From birth she had problems holding her temp and blood sugars, at 3 days old her left thigh swelled up to double the size. Doctors had never seen this before and transferred us to the RCH in Melbourne to test for a blood clot in the leg. The ultrasound came back clear so no clot but something still wasn't right, she wasn't feeding orally at all. 

Lots of specialists had come up to look at her. The genetics team treated us very poorly saying she was ‘just a normal baby’, ‘ just a little small’ but they ran random tests of a number of things as they had no ideas. Carly was black and blue all over from all the blood test IV's. 

On day 7 we were told that there was nothing wrong with her and that she was going to be treated like any newborn baby. She was taken out of the isolet and put in a cot, we were sitting there next to her sleeping and she was breathing very heavily, the doctor walked in the door at the same time and we asked him to look at her. He said he thought she just needed her nose flushed, the NG tube had probably made her a little stuffy. He listened to her chest and could hear a murmur.

Thirty minutes later a specialist was up to do an ECO they found a hole in her heart bicuspid valve and a severe narrowing of the aorta. So we were told about this and within thirty minutes another doctor came in and informed us the blood test for Turners Syndrome had come back.

Carly underwent heart surgery at 9 days old. She has had numerous medical appointments over the last two years. Carly has a damaged vocal cord which is linked to her heart op. 6th nerve palsy in both eyes which she is wearing glasses to try and correct, hearing problems and speech delay. Carly is 2 and 5 months and is smaller then her 11 month old brother she will be starting Human Growth Hormone in the coming months. Her estimated height is 4ft 3.

~ Carly’s Mum ~