Margo was born with what we thought was a hole in her heart undetected until she was born. I noticed she slept a lot more than was normal and had really bad reflux. I kept mentioning this to the HV and was told babies sleep a lot. I phoned the consultant to have a check on the hole in her heart to make sure it was healing as I had noticed that Margo's hands would go blue and lips would go blue when on the swing and she still slept a lot at 9 months. She was also small. At the appointment I was told that her heart murmur was much louder but that could be that it was healing. I was then told that she would be seen in 3 months time to check. I said I would like a second opinion and we were sent to Southampton Hospital.
Once there, thinking that it would be fine, we were called in to talk to a consultant. I knew something was wrong when there were 2 people that came in. We were told about the coarctation of the aorta, her bicuspid valve and aortic stenosis which was so severe they weren't sure how she was able to walk.
She was booked in to have surgery a few days later, it was a terrifying time. Surgery took longer than expected, the surgeon came up to let us know that she was in PICU and that we could see her soon. He took out the piece of aorta that he had removed and said he didn't know how she was still here. The narrowing was the size of a needle prick, when it should be the size of your finger. We were in PICU with this baby hooked up to wires and tubes.
She has made great progress and is having heart checks, is on medication and looking at her you wouldn't believe anything is wrong. She is turning 4 in July, starting school and is excited. She still gets upset going to hospital but understands that she has a poorly heart that needs to be checked to make sure it's working as it should. She still gets tired and has little breaks but is doing so well.