'He fought for 19 days, having good days, when we could see the light and really bad days when we were told to prepare for the worst.'

Beau fought a tough fight and we couldn't have asked anymore from him, he is our little soldier.

Beau & Esme

Tommy's guest blog, 12/04/2017, by Charlene

 

After trying to conceive for three years we finally fell pregnant with Beau and Esme on our second round of IVF.

On Christmas Eve of 2015 we had our 20 week scan. Being full of hope and excitement to see our twins, we were devastated to find out our son had a congenital heart defect.

On New Year's Eve, we went to the John Radcliffe hospital, Oxford for a specialist heart scan and were told Beau had an extremely rare heart condition called hypo plastic left heart syndrome. In short he only had the right side of his heart, the survival rate is 50% to school age with surgery.

We decided Beau was obviously a fighter to come this far and we would give him the best chance possible by going to Southampton for birth and surgery.

We did everything possible to keep Beau and Esmé growing for as long as we could. As the bigger Beau was the more chance he had. We had scans every fortnight to check on his growth and his heart, he did fantastic. When Beau and Esmé arrived at 37 weeks and 5 days, he was a healthy 6lb 4ozs.

He looked perfect and was supported for the first week of his life on the children's cardiac unit. We helped care for him like any other newborn, changing, washing, dressing and every day we cried for Beau, knowing he needed surgery to survive.

At 7 days old we prepared him to go to theatre for his first surgery. It was heartbreaking handing over our little soldier to the surgeons for major heart surgery.

We waited 9 long hours to hear things had gone to plan.

Finally we got to see our baby boy in paediatric intensive care. It was so daunting but he was still here with us and fighting strong. The nurses that cared for Beau were amazing, he always looked beautifully cared for even with his ventilator and other tubes and wires.

He fought for 19 days, having good days, when we could see the light and really bad days when we were told to prepare for the worse.

On day 25 Beau started to deteriorate very quickly, we spent every hour with him, hoping things would improve. Unfortunately it wasn't to be and at 26 days old our baby boy passed away peacefully in our arms with his sister Esmé by his side.

Beau fought a tough fight and we couldn't have asked anymore from him, he is our little soldier.

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