Living with a congenital heart condition: Ella’s story

When Chantelle and Ryan Ball welcomed their baby daughter into the world, their family was complete.

The couple’s son Cody, then four, was thrilled to have a baby sister to help look after. Chantelle and Ryan had the son and daughter they had dreamed of.

Chantelle sailed through her pregnancy and all seemed well. Ella was due for arrival on Christmas Eve, came a week later on New Year’s Eve, and the labour and delivery were textbook.

“Cody was super excited about being a big brother and we were thrilled our family was now complete,” says Chantelle. “Everything was going well and we took Ella home to start our new life as a family of four.”

Ella proved to be a dream baby. She slept brilliantly, going down at 7pm and waking just once during the night. The only slight concern was how long she took to feed, taking in only a few ounces of milk at a time. This was commented on by the health visitor, but it was dismissed as probable reflux and in every way Ella seemed healthy.

Life moved on. Ella remained small but Chantelle herself is petite, so still no alarm bells were triggered.

It was in the November before Ella’s first birthday that things started to go wrong. Ella developed croup and struggled to breathe, so much so that she was hospitalised.

Appearing better, and following treatment with steroids, Ella was sent home. But Chantelle felt on edge, because Ella didn’t seem to be improving and once again began struggling to breathe. An ambulance was called and she was back in hospital. Ella was treated and discharged, but at the same time referred to a consultant for a follow up.

Christmas and Ella’s first birthday came and went and then came the family’s appointment with the consultant.

Chantelle said: “We went along to the appointment at Bristol Children’s Hospital thinking we were wasting their time, because apart from being a small eater and petite, Ella seemed fine. They did lots of tests and then out of nowhere a family liaison person was brought in and we were told she had a heart condition and needed heart surgery ASAP. In seconds we went from thinking all was fine to our world being totally rocked.”

Ella had been diagnosed with subaortic stenosis, where the flow of blood from the heart’s pumping chamber is restricted due to excess tissue.

Ella’s first open heart surgery to remove the tissue took place in the summer. It was a five hour operation and she was just 18 months old.

Throughout the next year Ella thrived, but in the summer – following a minor bump to her head – Ella suffered convulsions. It transpired the heart tissue had regrown, which may have caused the convulsions. Ella had to face a second lot of heart surgery.

Now aged eight, Ella has been through open heart surgery four times. When she was five she had a seven hour operation during which a pacemaker fitted. She’s since need a fourth round to replace the pacemaker and to fit a donor valve into her heart.

“It’s devastating whenever she has surgery and we know she’s not seen the last of it. In the future Ella will at least need the pacemaker changed and the donor valve replaced, because it won’t grow with her. She also has a hole in the heart, which may need treating, so we just don’t know what the future holds.”

Ella is a bright, lively resilient girl who takes all the treatment in her stride. But even she finds she misses out. On one occasion when she wasn’t allowed to go swimming due to treatment, she asked, ‘Mummy why is the world so unfair?’ It broke Chantelle’s heart. After she has had a period in hospital, she will wake in the night saying she has dreamt she is still there.

“She’s a wonderful little girl but she hasn’t had the childhood we wanted for her, so we do as much as we can to make things special and wonderful for her and Cody.”

Chantelle says Heart Heroes have been a big support to the family.

“It is a very lonely, isolating place, seeing your child on a drip and hooked up to all these machines. You wonder ‘Why me? Why my child?’ so when we came across Heart Heroes it really helped to be able to share and have support from people who knew and understood what we were going through.

“Heart Heroes really go above and beyond and they listen to the families about what we need.”

If you have been touched by Ella’s story, why not get in touch with Heart Heroes and find out how you can help us to help more families like hers.

At Heart Heroes we support children living with congenital heart conditions and their families, in Gloucestershire, Worcestershire, Bristol, Wales and across the South West.