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Ruby Eve was born on 27th July 2016.  We received a Trisomy 21 or Downs Syndrome diagnosis immediately after birth. Ruby had a slight heart murmur but the doctors were not overly worried as it was a very small one and this is common with new born babies. At a day old Ruby was sent to NICU as she was more sleepy and unable to breastfeed, her oxygen levels also dipped. At 14 days old Ruby was transferred from Oldham NICU to Manchester Royal Children’s Hospital for a routine ultrasound on her heart. Heart defects are very common in children with DS. The scan showed Ruby had a very large Ventricular septal defect (VSD) measuring at 10mm. We were told she would need open heart surgery before she was 6 months old.

This was a very upsetting time for me as a parent, it was unexpected and a really scary thought. After the scan we went home and enjoyed our Ruby she didn’t show obvious signs of a heart defect. She was happy and feeding well, just like any other baby. She never required medication up until having her surgery. We had monthly follow ups with the cardiologist and we went to Alder Hey Hospital to meet surgeons to discuss the operation. It was very daunting and always on our mind up until it was time.

On January 11th 2017 we arrived at Alder Hey Hospital and Ruby went down for open heart surgery. It was the scariest and hardest thing I have ever had to do as a mother but I knew it needed to be done. We just had to put our trust in the surgeons and all the staff to take care of our girly. She was in surgery 4 hours and came covered in tubes but looked well and was breathing herself. The surgeon said it was the largest hole he had operated on and that she actually had an operation for Atrioventricular septal defect (AVSD) as she had a smaller hole and required a valve repair. The first 24 hours were critical but Ruby just powered through it. Just 5 days after open heart surgery we came home! She was a little star.

 

At her checkup I met a nurse showing some other parents around the hospital. She was telling them Ruby’s story to put their minds at ease and we had a little chat about it.  After surgery she just got stronger and stronger. We have had one heart check since and all looked fantastic. She has no leaks and no hypertension at all. The cardiologist doesn’t think she will require more surgery. She is 2 now, happy and healthy and we have no issues as far as her heart is concerned. She is turning into a cheeky little madam!