Alfred’s Heart
Written by Jodie
I had a relatively normal pregnancy, being low risk throughout. I had HG and from 9 weeks I was being sick or feeling nauseous. I had 2 hospital trips because of this but once I’d got medication for it, it was just nausea that I suffered with and everything else was perfectly normal. Fast forward to labour, I requested an epidural and during the check to see if I could, Alfred’s heart rate dropped so we needed an emergency c-section.
After a very quick birth, we went back to our room to get on with life. As the doctors did the regular checks on him, they heard a murmur. I don’t remember many conversations around this, just the sheer panic that I felt. They checked every day and continued to hear the murmur. After 5 days in the hospital, we were sent home with a six week check up appointment.
At this appointment, they found that Alfred had an ASD. An atrial septal defect, where there is a hole in the wall between the two upper chambers of his heart that shouldn’t be there. I had no clue what this was so automatically went to google to find out as much as possible about what my child had and what the future might look like for him. I immediately prepared myself for a lifetime of appointments and potential surgeries to fix this.
Our next appointment was when he was around 18 months old. He was a bit upset in this appointment so they couldn’t get a clear ultrasound but we were told that his ASD had got bigger and that there was now blood flow from left to right chamber in his heart. I was devastated and broke down in the appointment room. We left with an appointment for 2 months time and this wait was agonising.
I attended this appointment on my own as my partner was unwell, to be told it had been cancelled and was actually in another 2 months. The stress was unreal and I felt like I couldn’t breathe. Another 2 months with no answer.
The next actual appointment we both could attend and they did another echo. We were told ‘all looks really good, we’ll see you in 3 years’. I couldn’t believe it, I couldn’t speak and didn’t have the chance to ask any of my questions I had ready. I was so confused and was prepared for Alfred to be taking medication and potentially need surgery.
I had to send an email. I couldn’t wait three years with no answers or explanations about what was going on after being told it had gotten worse. And I’m so glad I sent the email.
I had a phone call appointment arranged with one of the cardiologists who was so lovely and explained that the person performing the review at 18 months wasn’t as specialist trained as the doctor who had just done the most recent echo. She said that it could have shown a bit of a different picture as Alfred was so distressed but as he was calmer in the most recent one, she could get a really good look and could see that it had in fact got smaller.
The weight lifted was amazing. I was so glad that I asked the questions. I’m still waiting for the paperwork to come through from the appointment explaining the size of the ASD now and what they saw but I am able to breathe and not think of my sons heart every single time I look at him.
We are also on a waiting list for rheumatology to see if he has raynauds. I always thought that his hands and feet and lips turning blue, yellow and purple was linked to his heart, but that’s another problem, another appointment and another referral to go through.
I’m so glad to be getting more answers and the possibility of Alfred not having to have surgery when he is older is amazing. It doesn’t completely rule it out but we can soak up every happy moment without the worry getting in the way for us.
Alfred is 2 in October and we are so proud of how far he has come already.
The fear as a parent is normal. I don’t think there is any way to ever get rid of it. I found that asking all of my questions to professionals helped, and there is no such thing as a silly question or asking too many times. We need to know. They do this everyday but we have never experienced it so we have every right to ask.
