A a year ago today my world was completely turned upside down it was the day I found out about my sons heart defect. A day that was suppose to be filled with excitement about going home with my new baby turned into a day of fear and tears. He had his first of many echocardiogram’s on this day. I remember asking throughout the scan what was going on but the doctor wouldn’t tell me anything until after he had finished the scan. But first he had to go speak to a consultant from a specialist hospital and send the scan pictures over to them. An hour later they had to do another echo to get more pictures of his heart for the consultant to see. I kept asking if I could go home and they wouldn’t tell me.
To be told there’s something wrong with your child heart is devastating and all I did was cry and beg to be let home. I was told the official diagnosis but being so distraught I couldn’t take it in. I only told family told no-one else knew what was going on and I had to break it to my husband. It was down to me to tell him that there was something wrong and we might not be allowed home.
The doctors confirmed with the cardiologist what we could go home that day but prepare for a call to go to the specialist hospital the next day. Coming home was a in a way a huge relief but also so very worrying when they say if he has any breathing issues dial 999 right away. If I weren’t so worn out and in pain i doubt I would have slept. I kept listening to make sure I could hear him breathing I didn’t let him out of sight. I had the most incredible bond with this little boy as long as he was with me he was safe. That’s when I think the anxiety really started.
The day after we got home the midwives came and I had to try to explain all the cardiac problems and that he would be going to the specialist hospital soon to be seen. The doctor that did the echo called me and asked if everything went ok last night and couple we get to the hospital that day. It’s 60 odd miles away I don’t drive and have no way of getting there and I was recovering from a c section 3 days before. I told them if they got us transport I’d go. I was on edge all day waiting for a call to say we’d be going but it never came.
That night I panicked that he wasn’t breathing right my parents in law reassured me he was and I suppose it was the anxiety without realising what it was back then. The following day more midwives and another call from the doctor checking once again that everything was ok. I was then told it would be a couple of weeks until we were seen by the cardiologist at the local hosptial in the mean time a community children’s nurse would come weekly to check oxygen saturations. I had no idea at that time what it meant or how helpful the nurse would become. You come to rely on these professional people coming in to tell you everything is ok with your baby. I lost my mothering instinct and relied on people to say all was ok.
It was never how I imagined I’d be spending the first few days after having a new baby and the experience of what we went through has put me off ever having more children. I couldn’t ever go through all this again with another child I wouldn’t be strong enough to cope second time around. I wasn’t strong enough the first time so I would never cope a second time.
You take for granted giving birth to a healthy child and never in a million years do you ever think that your baby will have a heart defect. My only advice would be to really take care of yourself during pregnancy as much as it is humanly possible. When you go for scans make sure they throughly check the baby’s heart and ask questions. If it’s turns out your baby does have a heart defect the most important thing to remember is never do it all alone. Get help straight away don’t wait like I did. I never believed I could do any of this and believe me it wasn’t easy. I hope that one day I can use my experience of this to help someone else. Somehow make it all worthwhile.
I did all of it alone for so long before getting the help I needed. When I did get the help it was like a release of everything I’d kept inside. I wish I’d gotten help sooner. When it was suggested about the referral i was so nervous but when it came to the home visit she was one of the kindest people I’ve ever met. Something about her made it so easy for me to talk to her something I’d previously struggled to do. This lady sat there and listened to every word I said and honestly it’s changed my life. I have another lady that comes to see me at home too. Someone else who was so kind and warm. All these people I never knew about here to help me and talk and listen.