Today Kyla's quilt came in the post! We are so delighted with the amazing work that has been put into her quilt! It's so beautiful words can't even describe how wonderful it is. We have had a tough few weeks with Kyla, and her quilt has arrived just in time for her surgery on the 7th and her heart surgery following shortly after. My husband and I are so thankful for this gift for Kyla we will cherish it forever. You are all so wonderful, forever in your debt.
Our daughter Kyla was born via forceps delivery in Aberdeen maternity hospital at 3:01am on the 10th July 2013. Prior to Kyla's birth we were told she was perfectly healthy, at our 20 week scan we were told our heart was great and she had 10 fingers and 10 toes. As I am a type 1 diabetic it was induced at 38 weeks, 3 days later Kyla was born and you can imagine our surprise. Kyla was resuscitated at birth, her platelet count and blood sugars were dangerously low, she had suffered several infections and complications meant we couldn't hold her for 2 weeks. She had an ng tube passed as she had failure to thrive and wasn't able to take any liquid. 3 days later we saw dr dean (genetics) who told us Kyla was likely to have TAR syndrome, a low platelet count accompanied with missing radi bone and thumbs, often with shortening of the arms. All of these Kyla had. Luckily her platelet count and sugars normalised after a few days which is rare in a child with TAR syndrome but not unheard of. We saw Dr tadros plastic surgeon to discuss what steps we will take to straighten Kyla's arms, unlock her fingers, turn her index fingers into thumbs (pollicization surgery) and possibly lengthen the arms. At 5 weeks old we took her home where we now see 2 sets of occupational therapists both in Elgin where we live and 60 miles away in Aberdeen, where she is also under the care of plastic surgeon dr tadros, genetics consultant dr dean and cardiologist dr wayalat. At 7 months her ng tube was removed and although she was very small and straggled to use her hands she learned to sit unaided and at 9 months learned to crawl. Something we were told wouldn't happen.
At 9 months old we made the trip to yorkhill children's hospital for her heart surgery. Originally this was to be a simple key hole surgery going through the groin. However whilst there a scan revealed her patent ductus arteriousus was much bigger than they had expected and her tubes and veins were around her back and shoulder rather than leading straight from the groin to her heart. A small heart murmur was also found although nothing too worry about. We came home and headed back again to yorkhill on the 9th April 2014 and prepared for surgery. On the 11th of April Kyla had the larger portion of the heart duct closed and the results were incredible. She began to put on weight and thrive immediately and we came home to Elgin 3 days later. Kyla can do anything a child her age can do and more. At 18months she can
Already count to 3, tell you the sounds of 10 animals, copy children's videos and say over 50 words. This month (January 2015) we are expecting a letter to invite us to Aberdeen for her first surgery on her arms, this surgery will be to straighten them one arm at a time. Metal equipment will be surgically inserted into her arm, a sort of 'cage' with pins in the side that my husband and I will have to turn 1mm a day untill her arms are in the correct position. The next surgery would be to insert a sort of rode to replace the pins to keep the arms in place. We are also waiting for an appointment for her second and hopefully last heart surgery to close a small residual duct, which should be more simple and hopefully we can do this via key hole this time as the duct isn't large. We saw dr dean in December who has sent her bloods for testing, so that we can get a final diagnosis although he is certain Kyla has TAR syndrome as all the signs are present. Kyla will undergo a minimum of 7 surgeries in the next year and a half.
You can follow Kyla's progress on her personal facebook page "Kyla's journey".
I am overwhelmed to have been chosen! It is something we will cherish forever. I cannot express how thankful my husband and I are.