Sparrow legs part 1..

How do I start this? Jay asked me to write our story, but it’ such a long story as Talia is now 10 years old, so l will give you a short burst of our life leading up to what we didn’t know.

My pregnancy was no different to my other children’s shai and Kira.Everything was fine, baby was growing was well as the weeks turned to months then boom along came this tiny little person whom was tiny at 4lb something. We nicknamed her sparrow legs as she had skinny little legs. No one questioned her size and we stayed in hospital until her body temperature stabilised. Medically all seemed fine everyone visited and from our Greek inspired (daddy is Cypriot) girls names shai and kira we named sparrow legs Talia.

We struggled with feeding but I was determined to breast feed which we managed with guidance and help, then carried on when we returned home. I also pumped breast milk as dad wanted to help with feeding. Weeks went by Talia didn’t really gain weight even though we saw our care team it was never questioned. I continued to breast feed until my health visitor and I decided it was not working so I still pumped and we introduced Talia to a high calorie milk. Talia would be so tired after feeding and would sometimes be sick a little but we continued our normal family life.

Talia had a new nickname princess pea as her body was still tiny her head seemed so big, she was a happy little soul made lots of noise and rarely cried…then the funny turns started. Talia would have episodes where she would go limp and sometimes it seemed she stopped breathing. Every time we would blue light it to hospital, she’s been resuscitated more than once. We have stayed in intensive care, special care and barrier  nursed. Life at home didn’t stop Shia and kira still needed us. They needed school and with a big family and great support from our best friends they had that. Kira wanted to be with us all the time, shai struggled with seeing his baby sister in so much pain and would stay away. We dealt with it all and stayed strong whilst not knowing what was happening. These funny turns continued, always progressing into a cold or an underlying issue with Talia. We were reassured that she was having febrile convulsions. I weaned as normal and yet Talia still didn’t gain much weight and would still be a little sick after feeding so I would feed little and often. Talia was not fussy she would eat most things.

By Talia’s  first birthday she was unable to sit independently and we knew something wasn’t quite right but all came to ahead after a doctor’s appointment for a cold showed a heart murmur. We were advised to go to the hospital for further testing and they discovered a huge hole in Talia heart. We were shocked, scared and didnt’ know what to do. As we were there Talia had a funny turn and projectile vomited in front of the heart doctor. She stopped breathing altogether and we was rushed to a&e to resuscitate her. The heart doctor spoke to us as he expected Talia may have a genetic condition called di George and asked for her to be tested, that came back negative, a few months later Talia was now aged 1 year 3 months and we were told she had Wolf hirschhorn syndrome..we lived the next few hours in a bubble, utter shock, completely overwhelmed…wtf are we going to do?