Baby Hope was born on the 2nd Jan 2021, during pregnancy my cousin Leanne was informed that Hope had Double Outlet of the right Ventricle and they expected to operate when Hope was 6 months old however this didn’t go to plan. When Hope was 2 weeks old she became very ill due to her severe pulmonary stenosis causing it to spasm and close blocking off blood getting to her lungs, they performed keyhole surgery to insert 2 stents into her artery to hold it open and allow the blood to flow through easier,  this went well and Hope was sent home 3 days later.

At 11 weeks old her oxygen levels dropped and she was rushed back to Leeds Hospital, 2 days later she had open heart surgery to attempt a full repair of her heart however this wasn't possible as there was a major artery in front of where they needed to repair so instead they fitted a shunt which was basically a bridge from one artery to further up her pulmonary artery so blood could still get to her lungs. Her kidneys stopped functioning after she had a hard time coming off the bypass machine, one side of her stomach stopped working and she had a lot of fluid build up around her body meaning she had to be on lots of different medication.  A few days into her recovery she began to get blood clots around her shunt stopping it from functioning and her lungs started to flood so she was given blood thinner injections and a drainage tube in each of her lungs, a week later she had blood in her stomach so was treated for NEC with more medication. 

She went down to theatre for a second key hole operation to have a closer look at her heart when they found that one of her valves were severely damaged making it leak and flood her liver causing her a lot of pain and discomfort in her stomach due to the pressure caused by how swollen her liver was. They agreed to attempted a full repair again but needed to wait for the swelling to go down first. However  things took a turn for the worst when on the 4th May my cousin and Hopes Dad were giving the most heart wrenching decision to make, Hopes body began to shut down and they were told this was her way of giving in so they were given 2 options - they could make her comfortable and she may survive 24/48 hours or they could perform a extremely high risk operation which would give her only 5% chance of survival.  This was no decision for any parent but unfortunately it was one they had to make, they decided to go for the surgery. They completely closed off the damaged valve, opened the hole in her heart even more so oxygenated and unoxygenated blood was mixing more easily,  inserted an even bigger stent into her pulmonary artery and removed the shunt the previously fitted.

3 weeks later she has been taken out of intensive care and they are slowly weaning her off of all the medication. The doctors have said we need to take it day by day but she is showing unbelievable signs of getting stronger and stronger.

The children’s heart surgery fund have been there every step of the way provided critical kit and equipment for the hospital and supporting the poorly children and their families by helping with food and travel expenses and the general welfare of the parents.