Dealing with the unknown of our daughter's rare heart condition

Marianne was being closely monitored in pregnancy because she had her own heart condition, so when doctors told her that her baby could also be affected, she was heartbroken, but not shocked.

She wore an Ivy & Gold bracelet with a heart charm during her pregnancy to represent their shared heart issues and to represent the hope that her daughter would be ok.

She has since added a personalised name bracelet with her baby girl's name - Autumn.

Baby at the Evelina Hospital London

"I was 18 weeks pregnant when they told me something wasn't quite right.

I have a heart condition so I was being scanned regularly because I was at risk due to my own health, but we also knew there was a chance our baby might have something similar, or worse. 

Because of Covid I was on my own when the sonographer found the problem.

It was the most emotionally draining time of my life.

My appointments were always long anyway - 5 or 6 hours sometimes - and I did manage to keep it together for several hours, phoning my husband, Luke, who was sitting outside in the car waiting for me, to tell him that they had found something wrong with the baby's heart.

It was towards the end of the appointment that I broke down with my midwife.

She was so comforting, pointing out all the positives and reminding me how well we were both being monitored and looked after, but I couldn't shift the feeling of dread.

When I got into the car with Luke it was clear he had been crying, which set me off again. We were both just so worried and the unknown was the worst part.

Suddenly we didn't know if we'd be leaving the hospital with our baby girl at the end of our pregnancy.
4d scan baby heart condition
From then on I felt like my pregnancy had been robbed from me.

We held back so much and didn't feel we could get excited or celebrate in the way we wanted to.

We didn't even tell friends and family that we were expecting until we were more than halfway along.

Every appointment we went to we had those really detailed 4D scans, but they weren't of her little face.

They focussed, understandably, on her heart but sometimes I just switched off. There are only so many times you can listen to someone talk about a part of your baby that isn't right.

The way her heart was showing up on the scan, they hadn't seen before and that just added to the unknown and the worry.

The monitoring appointments were an emotional rollercoaster - we went to every one holding our breath, worried that we would get even worse news, but we left them full of hope because she was growing and developing well, which was wonderful.

Because they kept finding new things to investigate with Autumn's heart, it was decided that I would give birth via planned C-section at 38 weeks, so that she could be whisked off for any treatment straight away. Which was exactly what happened.

By then I had ordered a bracelet from Ivy & Gold with a little heart charm on it to represent our hearts and a little bit of hope.

We didn't even tell anyone when we were going in to have her because there was so much unknown about her health and whether or not she would survive. We didn't want constant messages from people, we just wanted to go in and focus on our baby girl as a couple.

couple holding baby after c-section

Autumn was born on the 3rd December 2020 and taken straight to Neonatal Intensive Care. She was full of tubes and wires which was extremely traumatic for us all - even though we knew to expect it.

The Evelina London Children's Hospital were absolutely amazing with us.

newborn baby heart problem

They got Autumn onto a cardiac ward so that I could stay with her and they put Luke up in their on-site accommodation so he was able to be nearby 24/7. They funded the whole stay and his parking and everything.

Because of Covid we weren't allowed to see Autumn together, but having him nearby was such an amazing support for me. I don't know how I would have coped otherwise.

newborn baby heart problem

We also had our own nurse who could sit with me whenever I needed and they treat every single baby like they're the most special thing in the world.

While I was in hospital, I ordered another bracelet with Autumn's name on it and I didn't take them off at all while I was there.

Thankfully Autumn was allowed to come home with us after two short weeks and is being closely monitored as she grows.

newborn baby going home hospital

Her diagnosis is Right-sided double aortic arch with aberrant left subclavian artery and a complex abnormal intracranial vasculature. (long-winded I know).

They found that her heart is like a little helter-skelter. It's working perfectly fine but the blood supply goes on a bit of a strange journey, which could cause problems for her in the future.

baby girl heart problem

We have to keep an eye on her breathing and keep having her checked out as she grows, but right now she is a bubbly, bright five-month-old and we are so grateful for that.

We don't take a single thing for granted and will never forget how well the Evelina, especially, supported us at a really hard time in our lives."

baby girl heart problem

£100 was donated by Ivy & Gold to the Evelina London Children's Hospital to thank Marianne for sharing her story.

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We donate £100 to a chosen charity for each story we feature.