Nana of Jess

Jess was born 23rd June 2017, weighing 3lb 8oz, . She had a natural birth at 35 weeks . We had no idea of any problems apart from her slight premature and being very small which was the reason my daughter Ashleigh was induced .
We visited Jess in special care and apart from being small and a toe that crossed over , we assumed every thing was fine , and the nurses said she was doing every thing expected of her . We asked about her development and the nurses seemed unsure how to answer , saying that we would just have to see if she hit her mile stones . My daughter then said they were doing genetic tests to see why Jess had a low birth weight , and previous tests had been done on the small after birth. She said the doctor said Jess had dysmorphic features .
Jess is Ashleigh`s 4th child and my 2 eldest grand daughters attend a dance/drama school . I bought Jess baby tutu`s to follow in her sisters footsteps when possibly 3yrs old .
About 2 weeks went by with no results off the genetic tests and all the other babies came and went . Jess had numerous tests , she was found to have 2 holes in her heart .
The day came when the results were finally back and Ashleigh and John had a meeting arranged for the next day with the doctor . I was waiting for the text hoping that the tests were just a procedure to check everything out and she was fine . The message arrived and said Jess had wolf hirschhorn Syndrome and a link to what he condition was. Ashleigh said she might never walk, talk , and would need care all her life . I rand Ashleigh but she couldn’t even speak about it on the phone and was in total disbelief .
We spent days googling and all seemed so negative , we joined the face book group and found the family’s on there very supportive and welcomed us as part of the whs family .
We met with the doctor the next day to ask questions , but he just had the same information printed that we had googled off the internet . He said she had a deletion of 7.7 , but it didn’t mater about the size but what was deleted , and that wouldn’t be known till Jess was older , so we felt didn’t get to know a great deal .
We said she didn’t cry much and very placid and was that part of syndrome , but he said that was just Jess and not the syndrome. He also said she wouldn’t be able to lift her head as poor muscle tone , but we said she was already lifting her head and the doctor said he had noticed this and couldn’t explain it ,
Jess had tests on her kidneys and both are dysplastic , she has cysts on her brain which are to be monitored .
Jess is now nearly 8 month old and 9lb 13oz , still wearing her new-born clothes .
Jess has surprised us and the doctors , she is a little miracle angel . Her smiles just melt your heart , and cuddles are so relaxing .
She has to have heart surgery this year which is a worry but she is such a little fighter and I’m sure will continue to amaze us and defy all the negatives of this syndrome .
These support groups from family’s all over the world are a great help , all amazing super heros .