Our very first heart hero to be part of our #WarriorWednesday blogs is BELLA. Born in the midst of a pandemic, Bella has already fought her way through more than most.

Mum Megan tells us about Bella’s story and her journey so far…

Bella was born in July 2020 during the global pandemic and was our very own lockdown baby. She was the happiest little girl despite not being able to see extended family, other than through a window or socially distant in the garden.

 

She was always smiling and just loved being with her big brother, Bobby and watching him play. We thought we had our perfect, healthy little girl but sadly throughout her first four months of life, she never fed very well, and we noticed she was gradually losing weight.

 

After a course of regular weighing throughout November, the Health Visitor referred us to the doctors for further investigation. With an appointment booked the following day we received a call from the doctors saying we needed to go direct to Leeds Children’s Hospital where they would carry out a full health check.

 

Bella and I immediately made our way to hospital while my husband Richard rushed home from work to look after Bobby, as only one of us could be with Bella. After numerous assessments, we were told that Bella’s breathing was too fast, and she required a chest x-ray. After a short while, we were taken to a side room where it was explained that Bella had an enlarged heart, and she would need to be kept in hospital for a heart scan.

That night was long and agonising due to the uncertainty of what was wrong. The scan was carried out the following day and we received the devastating news that Bella had in fact got a large Ventricular Septal Defect (VSD) which is basically a large hole in her heart.

 

The consultant explained she would need open heart surgery to repair the hole as this was the reason that she had been unable to thrive. We were discharged that evening with the view to receiving a consultation appointment within the next couple of weeks to discuss Bella’s surgery further.

 

By the end of the following week, Bella had continued to lose weight so was readmitted and received heart scan the following day. This time a second consultant was called as there appeared to be some additional concerns on the scan. They had found another large VSD in our little girl’s heart – lower down but hidden away in a position they were struggling to measure and view properly.

Bella  spent her first Christmas in hospital

We were then discharged on the understanding that Bella’s situation would be discussed in the surgeons and consultants weekly meeting, where they prioritise the surgeries for the upcoming weeks. We received a call later that morning and were advised to make our way immediately to hospital. Bella needed emergency surgery and was booked in for 8am the following morning, Wednesday 23rd December.

 

Again, due to the COVID restrictions only one adult was allowed so we decided I would be with Bella while Richard stayed at home with Bobby. We had an emotional goodbye at the doors of the children’s heart ward as we didn’t know if that was going to be the last time we’d all be together as a family of four.

 

Late on the evening of the 22nd, the evening before the operation, we had to have a meeting with the surgeon who would be carrying out Bella’s surgery. I FaceTimed Rich and the surgeon talked us through the risk of the operation and the complexities associated to Bella’s operation due to the location of the second hole.

 

This was the first real frightening moment for us both and the first moment it all started to feel very real. As difficult a conversation this was, we knew Bella would not survive without surgery and we all agreed this was her only option.

 

On the morning of the 23rd, I carried our beautiful, smiley little girl to the operating room. I’ve never cuddled her so hard before they put her to sleep in my arms. I placed her on the operating table and prayed I would see her again.

 

The longest nine hours of our lives past when we eventually received the call to say Bella was out from theatre and in intensive care.  I rushed to see her and was relieved to see she had made it through the surgery. Her surgeon, Mr Pelella (the most amazing man I have ever met) proceeded to explain that her surgery had unfortunately not gone to plan.

Although the two large VSD’s had been closed successfully, when she was removed from the heart bypass, they soon realised something wasn’t right and so immediately put her back on for a second bypass.

 

This had led them to discover additional large holes at the bottom and behind her heart which subsequently meant her heart and lungs were still not able to work in unison together. The decision was made to put a banding around her pulmonary artery which reduces the workload on the heart and pressure on the lungs. Unfortunately, this means she will need further surgery in the future to deal with the additional holes and to remove the banding.

 

The following few days post-surgery were the worst days of our lives. Due to Bella needing a double heart bypass and her organs overworking her whole life, the news that was to follow was unbearable. We witnessed our little girl on more than one occasion fighting for her life. She fought so hard to stay with us and beat the odds and everyday seemed to result in more bad news for Bella. Not only had she had the whirlwind of open heart surgery, unfortunately the consequences of this surgery were life threatening for her.

Bella was on a life support ventilator for eight days. Her left lung collapsed three times which resulted in her having emergency procedures to put drains into her lung to ensure they were working properly. Also, her kidneys were failing which meant she was needing continuous dialysis to drain the fluids from her body.

Boxing Day morning we received the most devastating news that Bella had unfortunately had a seizure which, when rushed for a CT scan on her brain, showed us that she had very sadly suffered a stroke. This for us was just utterly heart-breaking. Our poor baby girl now had to fight even harder and her fight no longer is short term but most probably going to be for her whole life.

 

After Bella fought so hard to leave intensive care and started to build up her strength in High Dependency, 19 days from surgery they discovered a large sack of fluid that had built up behind her heart. This came as a huge blow to us as we were starting to see our little girl return and getting closer and closer to discharge.

 

After a couple of days of trying to clear the fluid with medication, the fluid wouldn’t reduce and was starting to make Bella deteriorate quite quickly. The surgeons and consultants made it clear that Bella would need another heart operation to drain the fluid.

Bella spent 25 days in the care of the Leeds Congenital Heart Unit

All the fears and anxieties instantly came back as we knew the complications Bella had previously had. Again, I had to walk our little girl down to the operating theatre and watched her drift off to sleep all over again. Thankfully, the surgery was a huge success and by the next day Bella was starting to show signs of improvements and was much happier in herself. We were regularly FaceTiming Daddy and Bobby at home and started to see the odd smile we had long waited for. After 25 days in hospital, we were eventually able to bring our little girl home; a day I thought at one point wouldn’t be possible.

 

Throughout Bella’s life, she has silently battled congenital heart disease but with a huge smile on her face. During her 25 days in hospital, she has shown a strength and a fight that I never knew would be possible. Every minute of every day she is showing us how incredible she is to still be here and continues to fight the biggest battle of her life.
As a family, we have decided that we want to raise awareness of congenital heart disease, especially in the current climate where, unfortunately for us, Bella’s condition was not diagnosed until her organs had started to fail.

 

During these horrific and unimaginable few weeks, the only positive thing has been to witness how incredible the NHS are on a daily basis. We cannot thank every Surgeon, Doctor, Consultant, Nurse, Care Team, Physio, Therapist and anyone else who has been part of the most amazing team who has saved Bella’s life on more than one occasion. They have all cared and attended to Bella’s specific needs as if she were their own, with the upmost care and love for her.

Bella at home with her Katie Bear she received from Children’s Heart Surgery Fund after surgery

The only way we feel we can show our appreciation to the amazing team and cardiology department is to raise awareness and to do our bit to raise funds towards Children’s Heart Surgery Fund which supports the Leeds Congenital Heart Unit.

 

We are so lucky to have the leading congenital heart unit in the country at Leeds General Infirmary. We met a number of families who had travelled from all over the country just to be seen by the very top surgeons and consultants who are part of the team at Leeds.

 

To ensure the level of care continues, they are always wanting to improve the machines and facilities while also helping and supporting families of the children in hospital. Any time in hospital in such circumstances is awful but having to go through it as an only parent during the global pandemic has been heart-breaking. Being alone trying to support our poorly child was so difficult but made so much more bearable by the amazing nurses and support team from the CHSF charity.

Due to finding further VSD’s and at some point in the future the PA banding needing to be removed, Bella will need more heart surgery in the coming months/years. Her care will be ongoing for the rest of her life so the importance of doing what we can to support the cardiology department is so very important and close to our hearts.

 

We want to ensure that Bella and any other families in a similar situation can continue to access the very best care possible. That’s why we set up our JustGiving page for CHSF.  We asked anyone who knows us or wants to show their support for such a brave, incredibly strong and resilient little lady if they could spare as little or as much as they possibly could – she is such an inspiration to us all.

 

This will help fund the care and support that Bella has needed and will continue to need to keep her battle going. Nobody knows how much they need the NHS until you are put into a situation where they are saving yours or a loved one’s life.

On #WarriorWednesday, we celebrate the amazing heart heroes we support in our region.

We tell their stories to raise vital awareness of congenital heart disease and recognise the care of the Leeds Congenital Heart Unit. 

If you would like to make a regular or one-off donation to help fund CHSF’s life-saving work, you can do so here. Thank you.

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