Deanna was born in January 2018 and immediately started requiring the services of our amazing NHS. After a complicated labour she contracted Sepsis and spent a week in Southamptons Neo Natal intensive care unit at Princess Anne Hospital. At 6 weeks old Deanna was rushed from her GP surgery to Poole Hospital with severe breathing problems, after being diagnosed with a serious heart condition she was put to sleep by the amazing transport team from Southamptons Pediatric Intensive Care Unit and was transferred by Emergency Ambulance to their amazing Unit at Southampton University Hospital.

Little were we to know what our future journey would be that scary night but the next morning it began with her consultant informing us that Deanna has Congenital Heart Disease. She had multilple VSDs with two very large holes in the top chamber of her heart, they actually couldn’t count all the other smaller holes as there were so many, she also had a narrowing of her aortic arch that may need surgery too. Deanna was very poorly and spent 2 days fully sedated in PICU.

Once they had stabilised her breathing with medication and started to reduce the fluid built up around her heart and lungs she was transferred to The Specialist Children‘s Cardiac Unit Ocean Ward. Here we would call home for the next 6 months. At eight weeks old Deanna had open heart surgery to place a PA band on her pulmonary artery to control her breathing to give her a chance to thrive and grow so she could be big enough for the complicated fix her heart required. We were told one of her large holes was so big she needed to be allot bigger, and still then there was so much more risk than a normal VSD closure. She would have to be fed by NG tube. This we would find out in the months to come.

At the end of July 2018 we were finally able to bring Deanna home, not only were we to be attending regular cardiac check ups but with her struggle to gain weight because of her cardiac condition we were under Southamptons amazing Gastro Team.

Over the next 10 months Deanna thrived, grew, and even was feeding herself without the aid of the NG tube. She did so well that in May 2019 we were informed that her PA band was working at its capacity and she will need surgery very soon.

10th of June arrived and once again Deanna was under the care of her amazing surgery team, she was put on bypass and some 7 hours later we were informed by her surgeon he had fixed 4 holes in her heart but she was in heart block and required a machine to pace her heart, not an unusual outcome. Nearly 10 days passed and she couldn’t recover her own beat and we were once again informed she will require open heart surgery to fit a pacemaker. The next day as she was due for surgery but unfortunately had suffered a severe infection from her first surgery that meant her body would reject a pacemaker. Her pacing wires were at the end of their life and she had to have emergency open heart surgery to fit new wires to her heart for her pacing box. This thank god went well and over the next 6 days she fought off the infection and was well enough for open heart surgery to fit a pacemaker. She was left with 3 small holes in her heart that were too deep to fix with sugery but it was hoped they will heal themselves.

48 hours after surgery she was up and about playing a very much weaker and smaller child and a further 48 hours later she was home with us after 3 weeks on Ocean Ward and PICU where she continues to thrive at home. We have recently been told by her heart consultant that apart from new pacemakers he doesn‘t expect any more surgical intervention and the three very small VSDs left in her heart are starting to heal themselves.

Now what about this little girl, beating sepsis at one week old. Open heart surgery at 8 weeks old. 3 open heart surgeries one on bypass at 17 months old so far in total 7 months in hospital and we never really heard much of a cry in this time. What about the NHS. During our time in hospital were were able to stay at Ronald McDonald House to be close to Deanna. We would like donations to the three charities that touched us in some way during our time there.

Ronald McDonald House Charities

Families of Ocean Ward

Friends of PICU

These organisations help children and families from all over the country that without them these children would be left alone in hospital.

Thank you to everyone who has filled us with such strength the last year and a half, peace and love to you all ❤️❤️❤️✌️✌️