Alayna was born with multiple, life-threatening heart conditions.
At just 8 months old, she had her first heart operation at the Leeds Congenital Heart Unit.
Although this was a success, the doctors knew she would need a more complicated surgery when she was older.
Alayna had her open heart surgery in February this year in the midst of the coronavirus pandemic.
Alayna is now back home and recovering with her family thanks to the incredible work of the Leeds Congenital Heart Unit.
Alayna is back home #becauseofyou
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Heart warrior ALFIE was only two days old went he was blue-lighted to Leeds after a routine check with his paediatrician.
11 months on, mum Kirsty tells us all about their family’s stay in hospital during the pandemic and how Children’s Heart Surgery Fund have been there to help.
Mum Kirsty tells us Alfie’s story…
This was my first baby I had a fairly straightforward pregnancy, only suffering with Hyperemesis gravidarum for the first three months. No concerns were picked up on my ultrasound scans.
Alfie was born in Doncaster via normal delivery at 40+6 on 4 April 2020 at 18:10. We were discharged that same night after the midwives were happy with both me and Alfie. They advised us to return two days later for his baby checks with the paediatrician.
We spent the first day at home with no serious concerns other than he didn’t seem to be taking much on his bottle and we noticed his breathing was a little strange. We thought this was because he was a newborn that this was considered normal behaviour.
We arrived at Doncaster on the 6th as agreed but only me and Alfie were allowed into hospital. My husband, Adam, had to wait outside in the car due to covid restrictions.
Alfie was rushed to Leeds at 2 days old
“We knew something wasn’t right. We just didn’t know exactly what was wrong.”
The paediatrician checked Alfie’s oxygen saturation levels. She thought at first it was a bad reading so swapped the probe onto his other hand. She then tried on both feet but still had readings of 60%.
Thinking that the probe was faulty, she asked me to warm Alfie up with cuddles while she went to find a new probe. Even the new probe was reading in the 60’s on all four limbs and this is when we knew something wasn’t right. We just didn’t know exactly what was wrong.
She transferred Alfie to the Resuscitaire and gave him oxygen support while she called in a senior consultant for his opinion. This is when they whisked him off to HDU and had suspicions about his heart.
I was escorted outside by a lovely nurse with Alfie’s empty pushchair to explain to Adam what was happening. They initially didn’t allow Adam to come inside but when they realised Alfie’s condition was critical and his life was hanging in the balance, they allowed us both inside to see him.
Alfie after his open heart surgery at 9 days old
The doctors and nurses were scanning Alfie which felt like a lifetime and all I could hear amongst the doctors was the words ‘TGA’ and at this time I had no idea what a TGA was other than I knew something was serious because of their tone of voice and urgency.
Once his consultant had finished scanning Alfie he came across to talk to Adam and myself. He explained that Alfie had a serious and complex heart problem, and he needed an urgent transfer to Leeds General Infirmary because Doncaster couldn’t treat him effectively. He then told us the words that we will never forget – ‘I have to tell you, Alfie could die in the ambulance’.
If we had stayed at home this day instead of having this appointment it’s likely Alfie wouldn’t have survived the night. From here onwards it was all systems go. We were asked whether we would like to take some photos of Alfie because they couldn’t guarantee he was going to make it to Leeds.
Once we arrived in Leeds, Alfie was taken straight into the cardiac catheter lab and was given an Atrial Balloon Septostomy (which essentially saved his life) along with a constant infusion of Prostaglandin.
We were then taken into a room with a cardiologist who was then able to explain his full diagnosis which was: Transposition of the Great Arteries (TGA), Coarctation of the Aorta (CoA) and a Ventricular septal defect (VSD). They explained that there was no other option than open heart surgery to correct this and without it he wouldn’t survive.
It meant that his Aorta and Pulmonary Artery were the wrong way around and therefore oxygenated blood was going to his lungs and deoxygenated blood was going around his body. This explained the low oxygen saturation level.
His Aorta was also too narrow meaning his heart was having to work really hard to push blood through the narrowing – which put him at risk of cardiac arrest. As well as this, he had a hole in his septal wall between the two ventricles.
The surgeons needed to stop his heart, disconnect the Aorta and Pulmonary artery to swap them back to their correct position. They then needed to open up the narrowing in his Aorta and to also patch up the hole in the septal wall.
This is when was when I was introduced to Children’s Heart Surgery Fund. We were advised that we would likely be spending around three weeks in hospital, but I only had the clothes on my back and my phone.
I had no other belongings on me because we obviously didn’t expect any of this to happen.
Alfie, celebrating Christmas 2020 at home with mum Kirsty and dad Adam
A nurse came in with a bag of bits and bobs to keep me going which was donated by the charity, it had food, drinks and toiletries, they also arranged for accommodation for me so that I didn’t have to worry about being too far away from Alfie which was a huge weight off our shoulders given the distressing situation. This was all free of charge too. We will never be able to repay the generosity of it all.
We were kept on PICU until Alfie’s surgery at nine days old, Easter Monday. The staff allowed Adam 45 minutes with Alfie before they took him down to theatre as this was the first time he was able to see him since his admission at two days old.
His surgery was done by Mr. Jaber and his team which lasted 9.5 hours and he had an excellent surgical result. He was then sent back to PICU to recover.
Because of the severity of his condition and because of the nature of the surgery, Alfie suffered a stage three kidney injury. He was very lucky and didn’t require dialysis like the doctors originally thought he might’ve needed. He was just corrected with different medications but as a result of this he was incredibly puffy.
“Children’s Heart Surgery fund were an absolute lifeline for us during our time in hospital.”
Alfie is now 11 months old and thriving
He was then brought down to the cardiac ward, L51, five days post-surgery where he continued to improve. The biggest challenge was trying to establish his feeding because he had significant reflux every time we tried to feed him. This meant he needed an NG tube but it was still a challenge trying to keep the milk down.
We spent seven days on Ward L51 before being discharged home. I was fully NG tube trained by the nurses and we continued to feed him via the tube at home for some time afterwards until his reflux settled down.
Fast forward 11 months and Alfie is doing amazingly well. To initially look at him you wouldn’t know that he has congenital heart disease other than the scar down the middle of his chest. He will need regular lifetime outpatient appointments and may need intervention in future as he grows but as it stands at the moment he is stable and thriving.
Children’s Heart Surgery fund were an absolute lifeline for us during our time in hospital. We were given a financial grant to cover our expenses as I’m sure you can imagine that buying food and drinks from a vending machine and on-site shop gets very expensive. It really removed that extra stress of having to worry about money during a difficult time.
They continue to support us to the present day. CHSF Family Support Worker, Sarah, has been lovely in checking in on us and providing support as I’m due to return to work from my maternity leave soon.
They also have a Facebook community group which has other heart families and is a really good line of support as the families share their thoughts/feelings of their experiences with their heart warriors too.
We will be forever grateful to these guys for all their hard work and support. The amazing funding they provide Leeds Children’s Hospital mean Leeds Congenital Heart Unit can constantly improve their services and resources to help other children with congenital heart disease. The support they provide is second to none.
Sometimes you can’t appreciate the work that a charity does until you’re fully involved with them but we absolutely would not be without CHSF now.
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.
More from the blog…
Sophie found out at her 20 week scan that her son Finley would be born with a life-threatening heart defect.
Three years on, Finley is thriving and Sophie wants to tell their story to help other heart families like hers…
Heart mum Sophie tells us about her son Finley’s CHD journey…
I found out my son had a heart defect when I was 20 weeks pregnant. I was then transferred to the LGI and had scans every five weeks.
These scans confirmed that Finley had Transposition of the Great Arteries. Finley had a seven and a half hour long operation when he was just nine days old.
This was three years ago now and my little boy is thriving! We are so grateful to the heart unit and in June 2018 I shaved my head for Children’s Heart Surgery Fund which raised £500!!
“This was three years ago now and my little boy is thriving!”
Finley after his open heart surgery
Finley now, age 3
My sons’ story is quite unique as after his open heart surgery he went on to have a further operation due to being ventilated at birth.
I just think it is so important to tell our story because there are families, including myself, that feel so upset with the procedures and worry about the outcomes. This then affects their mental health as well.
It is so important for this to get out there in order to support others going through this difficult time. So that they know they are not alone through this and can speak to people who have been in the same boat.
Sophie Kelton White
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.
More from the blog…
This #WarriorWednesday we say ‘hello’ to heart hero Toby.
Toby spent 46 days in the Leeds Congenital Heart Unit – from the day he was born, right through Christmas and even saw in the new year on Ward L51…
Toby’s dad Dominink told us about his son’s journey with congenital heart disease so far and the amazing care Toby received at Leeds…
We found out about Toby’s congenital heart defect at our routine 20 week scan at York Hospital.
They told us that there was something wrong with Toby’s heart and we were referred to Leeds. This is where our nightmare began but, thankfully, one that had very happy ending.
We had just found out that Toby had a heart problem when the team said they now needed to do some more tests on Toby.
They were worried that he could have some other complications like Down Syndrome and Patau Syndrome.
“We found out about Toby’s congenital heart defect at our routine 20 week scan”
It was so hard to watch my wife Nikola going through so much, all while still pregnant with Toby. But fast forward to now and I cry but this time with happiness that Toby is here next to me and he is a very happy baby.
We donate to Children’s Heart Surgery Fund as what you guys do for these babies and families is just amazing.
Toby after his open heart surgery
Toby with his Katie Bear teddy and medal
Toby was in the hospital for 46 days. From the day he was born (18th November 2020) right through Christmas and New Year.
The teams on Clarendon Wing Ward L51 and L47 are just AMAZING! From doctors and nurses to cleaners, you name it – they are all just WONDERFUL!!
Why should people donate to CHSF? It is very important people donate to Children’s Heart Surgery Fund so they can keep supporting the Leeds Congenital Heart Unit who perform miracles every day at Leeds Children’s Hospital.
To get all the finance and support they need is not easy but a little help from everyone can add up to so much for these children and their families.
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.
More from the blog…
Heart warrior Xavier celebrated Christmas 2020 recovering from his second heart surgery.
Mum Heather tells us about Xavier’s time on the children’s heart ward and how that inspired her family to fundraise for Children’s Heart Surgery Fund…
My son, Xavier, had his second heart surgery (his first open heart surgery) at LGI on the 22nd December and we were in over Christmas.
My family and I want to thank you all at Children’s Heart Surgery Fund so much. You helped to make our experience and stay on the children’s heart ward so much better than we could have hoped for.
When we were given the opportunity for Xavier’s operation date so close to Christmas, we weren’t sure we had made the right decision for our family.
But in the end, everything that was provided for us (in addition to amazing surgeons, nurses and supporting medical team) made our stay more comfortable and our Christmas very blessed.
From our stay in the parent accommodation so we could be close to Xavier, to the gifts that Xavier and his sisters received during our entire stay, we appreciate you all so very much!
“Everything that was provided made our stay more comfortable and our Christmas very blessed.”
Xavier with his Katie Bear teddy and medal
After Xavier’s first surgery (2011), my husband did a 100-mile cycle ride to raise money for CHSF, we managed to raise £800 then. This time, he is planning on doing a longer cycle ride (coast to coast), hopefully in April if restrictions have eased.
We have already surpassed our goal of raising more than last time, and are hoping to raise even more if we can! We are inspired by our boy, what a warrior he is, and also by CHSF, who helps families like ours. We will let you know how it goes!
In any case we can’t thank the charity enough for all that you did for us. I can’t say for sure that Xavier won’t need another procedure in the future, but I feel reassured knowing that we belong to a greater heart family. You’re stuck with us for now!
With appreciation,
Xavier Street and family (Neil, Heather, Olivia & Jessalyn)
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.
More from the blog…
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.
More from the blog…
A huge round of applause goes to awesome Heart Mum, Jenny Thackeray who went the distance during lockdown to say thank you for the treatment her daughter HARRIET received at Leeds…
Jenny told us about Harriet’s heart journey so far and how that inspired her to fundraise for CHSF…
In Sep 2016, we welcomed the arrival of our identical twin girls, Harriet and Darcie. As with most multiple births, they arrived early, and we spent some time in the Special Care Baby Unit at Scarborough Hospital. During this time, a congenital heart defect was discovered in Harriet; a hole in the wall that separates the two lower chambers of the heart, a Ventricular Septal Defect.
Harriet’s heart defect continued to be monitored, in the hope it would close on its own, however, the reality gradually dawned that this was not going to be the case. Harriet would require open heart surgery to repair the hole, to enable her to live a life without increased risk of heart disease, stroke, or other complications.
Harriet’s surgery took place on 3rd Aug 2018, almost age two, under the care of Miss Van Doorn at Leeds Congenital Heart Unit.
The care received at Leeds is something we will be forever grateful for and a time we will never forget. Not only did Harriet receive the best care, we, as very anxious parents, were made to feel welcome and were housed nearby, so that we were never far away, giving us huge comfort at such a tense time.
Children’s Heart Surgery Fund (CHSF) is a charity that supports Leeds Congenital Heart Unit, providing funding and resources to help care for the patients at the unit and their families. During the pandemic ‘lockdown’ that began in March 2020 I took up running, and later decided to set myself a challenge to raise some money to give back to CHSF.
I signed up to ‘Jog On 2020’ and run a marathon over 10 days from 26th Dec. Cheered on by Harriet and Darcie, I completed the challenge on 3rd January!
I have been so overwhelmed with generosity and support, raising a total of £1742. Given the current circumstances and the time of year, I am especially thankful that people have chosen to sponsor me. I know this money will mean such a lot to Children’s Heart Surgery Fund, and I’m so glad we got to give them something back.
Jenny – you are simply fantastic! And an even bigger thank you to the friends and family who sponsored you! Everything CHSF does for heart families in our region is because of amazing fundraisers like you!
FEELING INSPIRED?
Think you could take on a challenge to fundraise for our heart unit? Head over to our new VIRTUAL EVENTS CALENDAR for 2021 and take your pick of fundraising activities throughout the year.
Got a different idea? Need a bit more help? Don’t know where to start?
The CHSF Team are always here to give you a helping hand. Just call 0113 831 4810 or drop Lisa an email on lisa.williams@chsf.org.uk
Heart warrior Sophia was born in May 2020 with complex heart problems and was christened in the neonatal unit at Leeds Children’s Hospital.
We spoke to Sophia’s mummy Charlotte about her little heart warrior’s journey so far…
Sophia was born in May 2020
Our journey started on 10th May 2020 – the day Sophia was born.
The amazing midwife suspected something wasn’t quite right when Sophia was born at Airedale Hospital and asked for a second opinion. Sophia ended up in the special care unit having a heart scan and before we knew it, she was being moved to LGI by Embrace.
It was identified straight away that she had a seriously complicated heart problem. We spent the first couple of days of her life thinking she wasn’t going to make it due to how complex her heart condition was.
Sophia was christened at two days old in the neonatal unit. Then we were given some hope.
The amazing Carin Van Doorn and team believed they would be able to do surgery but gave us 50/50 chance of survival due to the complexity of restructuring Sophia’s heart.
Her open heart surgery happened at four days old and was long and terrifying. But Sophia came out of the other side after a few turbulent moments on the way.
Ten days later, due to Sophia having so much fluid on board, she finally had her chest closed. A few days after Sophia had her ventilator and last chest drain removed.
But the following day the ventilator and chest drain went back in.
Sophia after her open heart surgery
“Doing all of this alone due to COVID has made it even harder. Being apart from my son breaks my heart…”
Sophia now had chylothorax and her chest was full of fluid, making it really difficult for her to breathe. Around the same time, we found out Sophia had DiGeorge syndrome which they tested for after realising she didn’t have a thymus in surgery.
For a few days there was a lot of uncertainty as to whether Sophia was going to pull through.
Slowly and with lots of medication her chylothorax seemed to start clearing up and eventually her drain was removed again.
After seven weeks on a ventilator she came off it and finally started feeding again (at 1ml per hour to begin with).
At eight weeks old we finally left intensive care and moved to HDU on Ward L51. This is where Sophia received her lovely Katie Bear from Children’s Heart Surgery Fund.
Sophia is now 11 weeks old. We have moved out of HDU but are still on the ward now. The only thing keeping us here now is her feeding as her reflux is preventing us from being able to move on to bulk feeds.
I think we have learnt slow and steady is the way forward with Sophia. It really has been a rollercoaster of a ride.
Charlotte can’t wait for the whole family to be together
With every step forward it’s felt like we have taken a step backwards but hopefully we are getting there.
Doing all of this alone due to COVID has made it even harder. Being apart from my son breaks my heart but hopefully we will be home as a family soon.
Sophia is the strongest little warrior. All the staff at the LGI have been absolutely incredible. The room at Eckerlsey House has meant I can be near my princess all the time.
We are still going to have a huge journey with Sophia due to DiGeorge but we will deal with it as a family. She will need further heart surgery when she’s older. For now though we just want to make it home so that her big brother can finally give her a cuddle.
“We just want to make it home so that her big brother can finally give her a cuddle.”
I want to say thank you to the midwife and the special care unit at Airedale, the neonatal unit and PICU.
Ward L51 at the LGI – as well as all the surgical team and everyone that has been involved in Sophia’s care at the Leeds Congenital Heart Unit.
Eckersley House where we have been staying while Sophia is on the ward.
And finally Children’s Heart Surgery Fund. Without all of you we wouldn’t be where we are now. You really can work miracles.
UPDATE
Since this blog was written, Sophia is now at home with her mummy, daddy and brother.
She currently loves being at home, where she rolled over by herself for the first time at seven months old! Sophia will need further keyhole surgery at Leeds in the near future.
Mum Charlotte says: “Wearing red will help to raise awareness around congenital heart disease which is so important. It will also help provide families like us with parent accommodation, which was so important to us during this pandemic, and the Heart Unit with life-saving medical equipment.”
Wear Red on Friday 5th February for children like Sophia and raise vital funds and awareness of congenital heart disease.
Get your FREE fundraising pack here
Would you like to tell your story? We are always looking for families to feature on our blog!
Get in touch with Digital Marketing Manager Olivia on olivia.lewis@chsf.org.uk
1 in 100 babies are born with a heart defect and Eloise was inspired to fundraise for CHSF after her baby sister BEATRIX needed surgery at just 12 days old.
Eloise with little sisters Martha and Beatrix
When my Dad first told me that they were pregnant again, I was delighted! My baby sister Martha was two and full of life, humour, and love, and I was so excited for the new addition!
At one of the scans, it became apparent that the new baby had a heart condition. I was so worried, as were my Dad and his wife Claire, but the way they seemed to keep so calm about it was inspiring.
I’m so proud of how Claire has kept Beatrix safe from the moment she found out. And how my Dad managed to look after Martha while Claire was in hospital – she definitely loved being in charge of the house!
The way the Leeds Congenital Heart Unit have treated my family is amazing, they’ve had nothing but praise to say about everything and I just knew I had to do something to repay them.
Also knowing that Beatrix has to have two more operations and will be spending more time with Children’s Heart Surgery Fund during her life, I knew I had to show my thanks.
It was late in November when I looked online and saw that CHSF were asking people to raise £100 before the end of the year. I thought, well if I don’t make that much, I can just donate it myself! I thought I might just make it so I decided on going with the theme of 100 and completed 100 minutes of exercise every day in December.
Now exercise has never really been my thing, but I thought, I’m capable? Beatrix and many other babies from CHSF may never have this sort of capability, so that’s what inspired me and motivated me! It was a challenge, it was tough at times, but it really has shown me that if you want to do anything, if you put your mind to it, you really can do it!
And I’m still in total shock I’ve managed to raise over £1100! And I want to thank everyone at CHSF for everything they’ve done for my Baby B and my family, it’ll be forever appreciated! So thank you.
A huge thank you and well done to heart sister ELOISE and her enormously generous family and friends. It is only because of your amazing fundraising that we can keep being there for heart warriors like Beatrix! #BecauseofYou
Fancy taking on your own #1in100Challenge ?
Head over to our 1 in 100 Challenge page to get lots of ideas and inspiration on how you could fundraise for our heart warriors this year!
The CHSF Team are on hand to help with anything you need for your fundraising!
You can get in touch with us at info@chsf.org.uk or call 0113 831 4810
Heart hero Cait not only came to the open day for our forthcoming Teenage Support book (watch this space!), but has also recorded a special song in aid of CHSF.
This is Cait’s story in her own words. Read on!
Hi, I’m Cait, and I was born with Tetralogy of Fallot.
I had open heart surgery at 14 months old, which I obviously can’t remember, and then a keyhole surgery in March.
I grew up always knowing I had my CHD, from the yearly checkups and the scar down the middle of my chest, it was hard to mistake it.
But, I’ve been one of the luckiest ones. I’ve only ever had 2 major heart surgeries and I’ve had them at the easiest times to have them.
My last surgery was a heart valve replacement catheter and I was 15, right before COVID hit. Lockdown, for me, was easy for the most part as I was so used to having school off, working from home and only seeing friends every once in a while.
It was also strangely convenient as it came in just before I was due back into school, this meant I could spend more time in recovery and getting my strength up.
I spent many weeks doing yoga and relaxing, and then when I came to summer I was back to my normal self. However, the downside is that my post-op checkups were ultimately postponed.
After going through life only ever having checkups and the odd MRI, and then to go into hospital with also no memory of my previous surgery – was utterly terrifying, but with all the support from the doctors, psychologists and my family, I made it through plain sailing.
9 months on, I’m happy and healthy, started 6th form and had an amazing summer doing things I only dreamed about a year ago. However, some people are not as lucky as me. This is why this Christmas I decided to put out a fundraiser.
I’ve always loved music and it’s my biggest escape, so, with the help of my new friends at sixth form, I banded together a group and we recorded a cover of Brenda Lee’s ‘Rockin Around The Christmas Tree’.
After a few bumps in the road, we released it last Friday and we now have over a hundred plays a week.
My inspiration for this was my heart friends and all the other children like me – to help them through the hardest of times.
With the right people, family, friends, doctors, nurses and specialists, by your side; the load of having CHD, gets a whole lot lighter.