We got diagnosed at 20 wk scan. It was awful, the thought of our dream of a baby had been shattered> We got referred to Birmingham Childrens hospital which was an hour and half away and had to wait a week! We thought it must be wrong.
We had our appointment and yes it was confirmed the diagnosis was HLHS. We were broken, we asked millions of questions. It was a long pregnancy of fear and unknown with numerous appointments and facts! But there was questions asked "do we want to continue pregnancy?" "palliative care of 3 surgeries" or have the baby but no surgeries and take baby home to pass!!! I was having this baby as her odds were 80% survival, this was my decision.
9 months passed and I was taken to Queen Elizabeth hospital in Birmingham to be induced and gave birth to my beautiful baby girl!!!! We named her Seren (welsh for star). She came out screaming bless her, after what seemed to be seconds she was whisked away to have a medicine called prostin which kept her circulation the same as in the womb, but she deteriorated quite fast. Within 48hrs, she was in intensive care and surgeons needed to operate on her. Also, her body was just filling with fluid, she was christened there and then.
After surgery, she struggled too - nearly having to go back on life support, the team were on stand by!!! They, at one point, had to go back into her chest to drain her, after this was done we turned a corner and came on leaps and bounds until - At 4 months she had a cardiac catheter which showed an extreme narrowing. They ballooned / stretched it and Serens heart went out of rhythm, they shocked it back into rhythm but now she was struggling and her heart function wasn't very good. Next day we got told we had to back to surgery for her second stage (this was meant to be routine 2 day stay). Surgery went ahead - they were very concerned as now her heart function was very poor. We were beyond scared now, thinking our princess isn't gonna make it.
But in Seren speed of quite slow (lol) she picked up and after 2 months we came home again. Because her heart had taken a bashing she was very weak and eating became a struggle, we were admitted to hospital and they put in feeding tube, slowly but surely she got a little stronger.
Our weekly trips to Birmingham children's hospital became monthly!! And now yearly!! After 6 months, we got rid of feeding tube and she went from strength to strength, put on weight and hit all her targets, even the Drs are amazed!!!!
We are now 4 and yes we've hit hurdles, we had another cardiac catheter a month ago and came out with flying colours and nothing done, went home after 1 night!!!! We are now waiting 3rd stage next year!!!! We are still on our journey and appreciate every moment with this very very intelligent live wire, nothing stops this feisty little one!!!