This is Emma Grimshaw's story about her son Finlee...
When I found out I was pregnant it was a bit of a shock. I wasn’t in a good place at the time, but I thought I couldn't end it so I started to turn my life round. The pregnancy went well and the 1st scan was great. I could see this tiny little baby inside me growing away, I was very lucky as I didn't show that much when I was carrying Finlee and the midwife said I had good tummy muscles. The 2nd scan came and there was two of the Drs sat in the room and said everything was going great and they could see four chambers of the heart and that was that. They did all the other stuff they normally do in the scans and they then said they were happy and could I go. The last few weeks seem to drag and then the time had come - it all started and I was in labour for 4 hours (seemed like a life time) and then Finlee was here and I met my little boy for the 1st time but he was blue and he didn't hold his temp very well but they didn't seem to worried. He didn’t even feed from me for over 12 hours! All they did was tell me to put more clothes on him and put him in an incubator. After a while his temp picked up and they brought him out but his temp dropped again, so they just put him back in - that happened a few more times and then he did hold his temp but was still blue. After 2 days in hospital we were allowed home, which was great. My mum also booked time off work to help me out - being a new mum that couldn't even change a nappy before I had Finlee! A few days passed and he was still blue but his body was warm. I had a health visitor come round to do me a ‘show bath’ and I asked her why my son was so blue and all she told me was that he was fine in his body temp so not to worry. Then it was day 9 and in the morning Finlee let out this cry which was not right; I told my mum and she said see how it goes but he was then sick as well (he was not a sicky baby) I was just worried and after dinner that night I was at my mum and dad’s and called the out of hours doctors and they said if he was blue then call 999 and if you don’t do that then make your way to Torbay hospital but as we were told he was fine we did not call 999. When we got there the doc looked at him and said I want someone else to see him, that was it - they had him in there arms running through A&E to resus and there were 6 to 8 doctors and nurses round him and I was just stood there in shock. What the hell was going on with my son? At this time my dad was in the waiting room with all mine and mums stuff and the nurses started talking to me but I couldn't take it in - all I heard was his heart, I was in shock I left mum with Finlee and the doctors and walked to my dad. I was in tears and couldn't talk, my dad was saying what is going on and the A&E waiting room was full and all I could say was it is his heart, dad left me and went to find my mum and Finlee. We were put in to a side room and a doctor came after a few hours to say what was going on but I still couldn’t take it in, he was sent to ICU over night and was taking by blue light to Bristol Children’s hospital the next day. I didn't sleep that night just sat next to him in ICU, my mum and dad picked me up the next day and we had to meet Finlee at Bristol as I was not allowed to go with him. When we got there we were sat in a side ward with Finlee and a doctor came though and told us that Finlee had pulmonary atresia with vsd and he was sick and that if we had left it another 24 hours he would not be here. And that was the start of our CHD journey...
AT 13 days old, Finlee went to have his right BT shunt. We took him down at about 12pm and we didn't see him till about 7.30 pm as they got one number wrong in my phone number. He had a short episode of bradycardia with a drop in bloody pressure, immediately after the op CPR was carried out for 2-3 min, he also needed a blood transfusion. He was in PICU for 5 days when he should have only been there for 2 or 3 days, when up on the ward Finlee was not able to put any weight on and dropped some days but after 2 weeks he started to put on and we were allowed home. I went back to my mum and dad’s for a few months so they could help me out. In March he was started to get really sleepy again and going blue so we went back down to Torbay and his saturation levels had dropped from 80s to 50 and 60s again so he was taken back to Bristol, but because he had a slight cold he could not go on the heart-lung machine and he needed another shunt - this time on the left. After the op he was a lot better and only in PICU for 3 days, but it nearly didn’t last as we went back up on to the ward the 1st night was fine but the 2nd he was being sick all the time I asked if this was right but they didn’t seem too bothered but by the morning he was really bad and was put in to his own room. Then it got really bad and his temp hit 40s and was not keeping anything down. I had new doctors in and even the team from PICU in and out the room for 24 hours, he had got rota virus and almost ended up back down in PICU as he was that ill and only being 48hrs after coming back up from there. He settled after 5-6 days on supportive therapy, again with this his heart rate went up to 196. Since he has been home he has been fine but is now due for his OHS - he was due this on the 20th Sep but he got taken ill and spent a few days in Torbay hospital, but we now have a new date for 8th Nov and so far he has been well.
Thank you so much for sharing your special story!!
