'This little girl has no intention of giving up the fight – ever'
RACING around in a sparkly princess dress, giggling and dancing, Deanna Harris-Penny was loving every minute of her second birthday party.
For the 100-plus guests there to raise money for charity, it was hard to remember just how close to death Deanna had been for much of her life – a life that has been saved by a remarkable team of dedicated heart specialists, doctors, nurses and the determination of her parents to never give up hope.
It is also testament to the quite amazing bravery of a little girl who, right from when she was tiny, has constantly fought for her life.
As dad Dan Penny said: “This little girl has no intention of giving up the fight – ever. The last time we took her down to surgery she looked at me as if she was saying ‘Don’t worry dad, I’ve got this’.
“Her courage has astounded us. She keeps us going, not the other way around.”
Together with partner Tina Harris, he is now fundraising to thank the three things they believe were crucial for helping the family through their traumatic ordeal.
They are supporting the paediatric intensive care unit at Southampton General Hospital; its specialist cardiac department Ocean Ward; and Ronald McDonald House which offers rooms to families whose severely ill children are undergoing treatment.
Tina said: “All three have proved completely crucial to us and Deanna. We want to give thanks to them and also to raise money so that other families can have the help we have had.”
For much of her life Deanna has been hooked up to a heart monitor. In fact, it has so formed the soundtrack of her life that she gleefully forms her hands into a heart shape and mimics the machine’s rhythmic noise when she meets someone new.
Tina and Dan, from Somerford, were at school together but met again later in life, and Deanna was a much-wanted baby.
As Tina says: “She was almost our miracle child. I was 39 when I fell pregnant with her and we were both thrilled.”
As an older mother Tina was warned there could be complications, including a higher risk of Down syndrome. She underwent tests to rule this out.
But what the tests – and even a 4D scan – completely missed was that Deanna had a serious congenital heart condition.
She had multiple small holes, too many to count according to the specialists, along with two very large holes in the top chamber of her heart. One was so large it stretched nearly from top to bottom.
Deanna also had a narrowing of the aortic arch – meaning she was not receiving enough oxygenated blood to her lungs.
Tina explains: “After a very difficult labour she seemed okay. She breastfed well the first time. But within hours I just had this feeling something was wrong.
“She was breathing funny, crying and wouldn’t feed. She started retching green vomit.”
Deanna was put into Poole’s neo-natal intensive care unit, and then transferred to Southampton’s Princess Anne Hospital where they have a more specialised paediatric team.
At Southampton Deanna had tests and was diagnosed with septicaemia – she was in a critical condition.
Dan said: “There were these purple butterflies on some of the doors and I later learnt it meant that inside the room a baby or child was dying. I just felt so lost, so useless.
“Deanna looked so tiny, covered in wires in an incubator. I thought about the purple butterflies, fearing my child would be next.
“But within days she was on the mend, having kicked the hell out of the septicaemia. It was the first indication of just how strong and brave she is.”
After a week Deanna was allowed home. Dan said: “We had our perfect little baby back again, we thought that it was it, the scare was over.”
But from the beginning Tina was not so sure. Her instinct kept screaming that something was terribly wrong: “We’d been warned her breathing might seem fast, but it just didn’t seem right.
“One day when she was just six weeks old, she seemed particularly bad. I took her to the doctors. She was put on oxygen and an ambulance was called. We were blue-lighted to Poole hospital where they diagnosed her with bronchitis.
“Dan rushed to join me from work. We waited while a paediatric specialist examined her. That’s when our world exploded.”
Tina and Dan were told that Deanna had a “severe” heart defect. She needed to be transferred immediately to Southampton University Hospital’s PICU ward.
After two days there she was transferred to Southampton hospital’s Ocean Ward – which houses their specialist heart department – a place which was to become “home” for the family for the next six months.
Dan said: “We were scared, terrified, but Ocean Ward was amazing for us. The nurses, the doctors, the other parents – there is so much support.”
What also helped Dan and Tina in their darkest days was being able to stay near Deanna after being given a room at Ronald McDonald House.
Dan said: “The environment is just so wonderful, they pick you up and wrap you in a blanket of care. It’s like a little bit of home, a kitchen, fridge, food, toys, everything you need.”
The strength Ronald McDonald House gave them became vital to the couple when, on the second day on Ocean Ward, doctors informed them that Deanna was in full heart failure and her liver was struggling to cope.
Dan said: “I just felt my baby slipping away. I’d waited for her all my life and now it looked like she was leaving us.
“The doctors told us ‘she is in a bad way, but she is in the best place’.”
At the age of eight weeks Deanna was taken down for her first open-heart surgery in March 2018.
Tina said: “We were with her when they put her out, they put a mask on her and she held on to our fingers with her own tiny one. She wouldn’t let go. Her strength even then was just so phenomenal.”
Three hours later Deanna was back in recovery, the operation a success. Her parents were told she faced more heart surgery but only once she had put on weight.
Tina said: “We were finally able to bring her home. It meant so much to us that we could show her off, take her for a walk in her pram, none of which we had been able to do.”
Deanna was being fed through a tube but was struggling to put on weight. The couple were told she faced further major surgery, but first doctors had to find out why she was not gaining weight.
Dan said: “Tests revealed that she had a gastro emptying issue. Once that was fixed by a change in her milk she put on pound after pound, we felt like the proudest parents.”
Deanna was allowed home and put on a high-calorie feed to reach her target weight for her operation. Tina said: “By now she was a proper little girl, she was only a year old but she tried to mouth ‘I love you’ to us when we said it to her.”
In June last year Deanna had surgery to fix four holes in her heart.
Dan said: “She was down for seven hours. The op went well but she was struggling to recover her heartbeat, so she was put on a pacing machine.
“Doctors had hoped to install a pacemaker, but Deanna had picked up an infection from the first surgery. Instead they had to operate again to install new wires to her pacing machine.
“We learnt later that they had, in fact, had a huge meeting about Deanna with some experts saying she was too poorly to have the op, and others saying she had no choice.”
The surgery worked but left Deanna with a large scar from her neck to her navel. Not that she seemed to care. Tina said: “She was supposed to stay still in her cot, but she was having none of it, she just wanted to roll around.”
After six days Deanna recovered enough to undergo yet more surgery to fit a pacemaker and three days later she was able to go home. Her parents have been told that apart from new pacemakers, she will almost certainly need no further surgical intervention.
A proud Dan said: “She amazes us every day.”
The couple are now fundraising as a thank-you for everyone who saved Deanna’s life and to help other parents who face the same traumatic journey.
Tina said: “Everyone talks about Great Ormond Street but the paediatric intensive cardiac unit at Southampton is just phenomenal. Without it, Deanna would not be here.
“For us the love, care and support we received on PICU and Ocean Ward was just amazing, and for families like us it is vital.”
Dan added: “Ronald McDonald House is such a special place. We can never repay any of these three organisations enough for what they have done for our family.”
The couple have set up a JustGiving page and have already smashed their target of £500, so far reaching £1,700, with the Bournemouth and Christchurch branch of the Lions donating several hundred pounds to Ocean Ward after adopting it as one of their charities for the year.
And should Dan and Tina have to use the facilities at Southampton again, they are safe in the knowledge of how well they will be cared for.
Tina said: “When we were going through such a terrible time it was like having a guiding light showing you the way. We are very lucky in the south to have such excellent facilities and we really need to make sure they continue.”
To donate visit www.justgiving.com/crowdfunding/tina-harris-5.