‘We were totally petrified by knew Ruby wouldn’t survive without this operation’

  • Age: 4 yrs
  • From: Leeds
  • Mum & Dad: Natalie and Alex
  • Brother: Ethan, 4mths
  • CHD CV: Tetralogy of fallots, pulmonary atresia with ventricular septal defect and overriding aorta


“We didn’t find out anything was wrong with Ruby until she was three days old. She was a very sleepy baby and didn’t feed well at all.

During a routine baby check the doctor told us she could detect a heart murmur but, as Ruby was born six weeks early this was common and we thought it would probably heal on its own. But when the midwife checked Ruby’s oxygen saturation and found out it was only 57%, she was rushed to the neonatal ward at St James’s Hospital and put on a ventilator.


We were devastated – we couldn’t believe our newborn baby girl had been so seriously ill and we just didn’t know. An ECG and heart ultrasound scan and he confirmed the awful news that Ruby had a rare life-threatening heart defect and without surgery, she would die. Ruby was transferred to the heart unit at the LGI and, at that point, our lives changed forever. We didn’t know if Ruby would survive.

She had her first heart operation at four weeks old. A BT shunt was fitted – a temporary measure as she was too small for her full repair. We were able to take her home when she was six weeks old. We knew the repair would follow, but Ruby needed to be a certain size before that could be attempted and she struggled to gain weight. We visited cardiac outpatients every three months and after about a year Ruby was showing signs she needed her next operation as she became blue and breathless and wasn’t meeting her milestones.

I received the phone call I was dreading on December 19, 2010 to say Ruby was now at the top of the surgery list and a bed was ready for her and she needed to go into hospital in two days’ time. There was then a mad rush to see family as we had to cancel all our Christmas celebrations.

Ruby underwent nine hours of open-heart surgery on December 21. The surgeon was very honest with us and said he had no pre-surgery plan for Ruby as her defect was so complex he was going to decide what he could do once he could see her heart. We were petrified but knew that without this surgery she would die anyway.

Handing her over to the surgery team was probably the hardest thing we have ever had to do but we knew she was in the best hands and without this operation… well, it doesn’t bear thinking about. After the longest day of our lives, we got the call to say she was out of theatre and recovering in intensive care and seeing her again was such a relief. She was so pink and looked so well. Ruby recovered well and was off her ventilator and breathing by herself after just 14 hours, and was back up in the ward two days post-op.

We took Ruby home six days after her surgery and she has come on in leaps and bounds. She has now caught up with all the other children in her milestones and gained the weight she needed very quickly. The difference in her was amazing. Today Ruby is a lively, busy chatterbox who does not let her condition stand in the way of leading a normal life.

She attends mainstream school, is excelling in her learning, loves being around other kids and has made lots of friends. She knows her limits and knows when to have time out to rest and she has coped so well with what life has thrown at her so far. It was a massive shock to be told how poorly Ruby was and what would face us for the rest of her life. We struggled at first to accept her condition as we didn’t know what the future would hold, but Ruby soldiered on and was such a happy baby. We knew we had to stay strong for her.

With the support of our family, friends and all the staff at the unit, we made it through the other side. I underwent counselling through the hospital in the run-up to Ruby’s second operation – this helped me a great deal and I know that service is available to us if we ever need it again. My advice to any other parents going through this is to stay strong and accept all the advice and help that is available to you as it can help so much.

We went through some very tough dark days but we had to be positive and put our daughter’s life in the hands of the doctors and surgeons. Without them, Ruby would not be here today. We have had many cardiac outpatients appointments, and I’m nervous every time we go. We know that she will need more surgery within the next couple of years but we’re not fazed. She is in the right hands. She has done amazingly well and we are so proud of her.”