CAVSD: Sienna’s Story

Sienna’s congenital heart defect, CAVSD, was diagnosed at her 20 week scan. Here, her mum Natalie shares their story:

Our daughter, Sienna, was born with complete atrio-ventricular septal defects (CAVSD).

Our 12 week scan was good and everything was normal. When we went for our 20 week scan everything seemed fine, but we had to go back a week later as they couldn’t get the measurements they needed.

A week later, our world came crashing down to the words, ‘I’m sorry but your daughter has a heart problem’.

Five days later, we where in the hospital to have our fetal echocardiogram. We were told our daughter had CAVSD and that there was 50% chance she could have Downs Syndrome too. We wouldn’t have loved her any less if she did, so we went for a amniocentesis. It was hard, but the doctor was absolutely amazing.

We had our results 24 hours later and it turned out she didn’t have Downs Syndrome.

Every few weeks, we went for fetal medicine appointments as she was growing big. On top of our daughter having her heart problem, I then got gestational diabetes.

It was so hard going to those hospital appointments because my husband had to work 12 hour night shifts with no sleep. Being at the hospital a lot was stressful.

At 38 weeks doctors decided to induce me, even though the consultant said there was a 1% chance she would need surgery when born. He said he didn’t want to take that chance, so the decision was taken to have her at St. Michael’s Hospital in Bristol.

She was born and thankfully didn’t need surgery. We were at Bristol for two weeks until being moved back to Cardiff.

From there it was a battle. Sienna was struggling to gain weight and was tube fed for two years. She had really bad reflux, so she was being sick constantly. She also had a low immune system due to the heart problem so got chest infections often.

Just before her 2nd birthday, Sienna had her open heart surgery. It was the longest seven hours of our lives, waiting for the call.

Our little girl was strong. After surgery, she was trying to sit up whilst having a drain in, so they had to sedate her. She needed to rest to help her heal.

We were at Bristol for five days and I want to thank Bristol Children’s Hospital for everything they have done for her.

Sienna is now four and doing great. She has no more problems as of yet and still has regular check ups.