At the 12weeks scan my partner and I were so excited to see our baby and hear her heartbeat.. We were both healthy and young and no one in our families had any type of disability so we never imagined that our baby wouldn’t be anything but healthy.
The scan took a long time,we were told to leave and when we were brought back the sonogropher explained that baby had a cystic hygroma more than double what it should be, wouldn’t survive and didn’t want to give us a scan picture!
My partner and I were devastated. My world crumbled around me and I was inconsolable. We were going on holiday two days later and while away we decided to have the CVS and genetic testing to see what was going on. I endured that and they found nothing…baby was clear and they expected the hygroma to go away…but at my 22 week scan they noticed something with babys heart but as she wouldn’t sit still we didnt find out it was a congenital heart defect until i was 29weeks.
None of the doctors knew what to expect when she would be born and when that day came she was rushed to NICU where she was intubated and on and off breathing machines for 4months until she finally got a tracheostomy. That was devastating heartbreaking and so hard to overcome emotionally.
Finally 5 months after she was born we got a diagnosis..Noonans. We had no idea what Noonans was and we had to deal with a baby who not only had to be connected to a ventilator but was also suffering with a genetic condition. I cried and didn’t want to accept reality until she was discharged at 7months.
What is hard is not knowing how she will develop, when she’ll remove the trachy and how much extra help she’ll need. Because Noonans varies from person to person no one can predict how she will develop.
Inspite of all of this Lua has shown me what is it to fight to stay alive. She is my definition of strong and I absolutely adore her!