Born at home in Kippax Leeds, Jacob’s heart defect was detected in his first week of life after being admitted to Leeds Children’s Hospital when he wasn’t feeding well…
Jacob’s mum, Iona, said:
“Jacob was born at home; everything was amazing and there was no sign immediately that he had any heart issues.
“Roll forwards to three days old and Jacob wasn’t feeding well and due to another undiagnosed condition called Hirschsprung’s disease – he was very bloated.
“We headed to hospital and were immediately admitted. After an avalanche of information, he started to improve. He very likely had Down Syndrome, very likely had Hirschsprung’s disease and then later his colorectal surgeon picked up that his heart didn’t sound as it should.
“Jacob was then diagnosed with complete AVSD. He was a COVID baby and during this time no family were allowed into see us in hospital, or our other children. Not even both parents could be there together!
Born at home during the pandemic, Jacob was diagnosed with complete AVSD after his colorectal surgeon noticed that his heart didn’t sound quite right during other checks.
“Jacob was put onto a few medicines and 24/7 monitoring in NICU. We had a nasty jolt when he was working harder than usual to breathe, and a doctor told us that he was in heart failure. Up until this point, I hadn’t realised he was in heart failure, so cue an absolute meltdown that our baby’s heart was giving up.
“At 5 weeks old, Jacob had to have ileostomy surgery to help manage the Hirschsprung’s disease.
An ileostomy is an operation to bring the end of your small bowel to the outside of your tummy to form a stoma.
“Having to go through this knowing Jacob was in heart failure had us so worried we weren’t sleeping or eating. I had convinced myself that he wouldn’t make it through surgery because he was so ill and very small. Thankfully he sailed through the surgery and recovered like a superhero!
Jacob had his full heart repair at the Leeds Congenital Heart Unit when he was 7 months old.
“Two weeks later Jacob was scheduled for a PA band surgery to buy him some time before he had to have the main repair to his heart. The surgery went well but afterwards he developed sepsis. This meant he needed a blood transfusion and he had to be intubated again. It felt like he couldn’t catch a break!
“Jacob recovered slowly and was allowed home a couple of weeks later, on regular medicines to manage his blood pressure. Throughout this whole time, we were so scared that he might catch COVID as he was so very vulnerable to everything.
“At 7 months old, Jacob was brought in for the full repair to his heart. The surgery went very well, but in true ‘Jacob fashion’, he developed sepsis and had to be transferred back to PICU and intubated again. Following his recovery and up to present his heart hasn’t been a cause of any concern, he doesn’t require any medicines for it and has yearly check-ups.
“Compared to the trauma of those early days in his life he is like a different child.
“Because of Children’s Heart Surgery Fund, we were able to stay in the parent accommodation when Jacob was having his second heart surgery, and some essentials were provided for us.
“Being able to be close while he was recovering in PICU made a huge difference to us.”
13 babies are born every day in the UK with a heart defect, making CHD the most common birth defect.
In our region alone, Children’s Heart Surgery Fund is there for over 17,000 babies, children and adults like Jacob every year, who are living with a heart defect. We’re there to support their families too!
Help us to raise vital funds this #HeartMonth, by making a donation to our essential and life-saving work. Thank you.
Daisy’s mum, Lucinda, said:
“Our experience with congenital heart disease began at our 20 week scan. Having previously had a history of problems, we were told that baby would be checked very carefully. Upon her silence we immediately knew the sonographer had found something. Baby’s heart looked flappy in comparison to my other daughter’s scan.
“We were told that our baby had an atrioventricular septal defect (AVSD). Having previously lost a baby to a different birth defect, we were comforted in the fact that so much research and development had gone into heart related problems.
“Whilst she would still need surgery to survive, the success rates of our baby’s surgery were very promising. We had no idea so many babies were born with heart related issues.
“We very quickly were seen by the team at Leeds who comforted us and discussed treatment for our baby, whom we named Daisy.
“We had regular appointments with the team and Sandi our counsellor. With support from her and the team making sure we were looked after, we found great comfort during a stressful time.
Daisy had life-saving open heart surgery for her AVSD at 5 months old at the Leeds Congenital Heart Unit, and Daisy and her family were supported at every step by Children’s Heart Surgery Fund.
“Daisy had open heart surgery at 5 months old at Leeds. She did amazingly well, and we were only in hospital for a week. The first days were tough to see. Her surgeons we can’t thank enough. We were comforted by the staff in PICU, who cared for Daisy so lovingly after her operation. She always had her blanket and the teddy from her sister by her side.
“After her drains came out, she began smiling again and we started to get our little girl back. She has been doing well at her regular check-ups, where she likes to be cheeky and wiggle during her echo. We have just celebrated Daisy’s first Christmas thanks to the Leeds Congenital Heart Unit.
“We had travelled from Hull to Leeds for many appointments, but during Daisy’s surgery we were concerned how we would afford to stay over. My partner had been off work a few weeks with stress and I was still on maternity leave.
“It completely made a difficult situation just that bit easier. It was one piece of the jigsaw that was in place that we didn’t have to worry about during uncertain times.”
“Children’s Heart Surgery Fund’s support meant we had somewhere to stay. This was such a weight lifted off of us. It was such a relief knowing that during our scariest times when our baby was in intensive care we could be by her side, without getting into the financial struggles paying for accommodation.
“It completely made a difficult situation just that bit easier. It was one piece of the jigsaw that was in place that we didn’t have to worry about during uncertain times.
“Then there’s Katie Bear. My eldest really struggled when we returned home as she was frightened her sister had new scars. Slowly she began reading books to Daisy, with Katie Bear by her side. Katie Bear is not only something to treasure for Daisy, it helped her sister be comfortable to adapt and interact with her again.”
13 babies are born every day in the UK with a heart defect, making CHD the most common birth defect.
In our region alone, Children’s Heart Surgery Fund is there for over 17,000 babies, children and adults like Daisy every year, who are living with a heart defect. We’re there to support their families too!
Help us to raise vital funds this #HeartMonth, by making a donation to our essential and life-saving work. Thank you.
Although Rebecca was born with the heart murmur, it wasn’t until she was pregnant with her second child that her heart problems became more apparent…
Rebecca said:
“From birth I have had a heart condition. I was born with a heart murmur and was under the care of Killingbeck Hospital in Leeds until the age of 13.
“From 13 up to the age of 31 I lived a healthy life, having one child and then at 31 got pregnant again with my second – which caused my heart problems to become more apparent.
“At 29 weeks pregnant, I had a heart scan where they found I had severe completion with my heart. I had pulmonary stenosis which was a blocking in my heart valves and was causing me a lot of complications. I was admitted to Sheffield Hospital while I waited for a bed at Leeds, under the care of Dr English.
“I will be forever grateful of the care and treatment I received from Leeds Congenital Heart Unit – they are all amazing.”
“To take the pressure off my heart, they made the decision to deliver my baby via c section at 32 weeks, and the care I got from all nurses doctors and staff was amazing.
“After I had my baby, they decided that my body needed to recover before I was well enough for surgery.
“Seven months after having my baby I underwent heart surgery under the care of Dr English, Dr Oliver and surgeon Mr Stefano Congiu.
“Surgery went well – I had a heart valve repair and this year is my 10 year anniversary.
“I’ve had a few minor problems since my surgery but the team at Leeds have always supported me amazingly and helped with them. I will be forever grateful of the care and treatment I received from Leeds Congenital Heart Unit – they are all amazing.
“Children’s Heart Surgery Fund helped us both when I had my daughter and when I had my surgery. They provided my partner and youngest child a room, so we weren’t apart as a family at the time.”
13 babies are born every day in the UK with a heart defect, making CHD the most common birth defect.
In our region alone, Children’s Heart Surgery Fund is there for over 17,000 babies, children and adults like Rebecca every year, who are living with a heart defect. We’re there to support their families too!
Help us to raise vital funds this #HeartMonth, by making a donation to our essential and life-saving work. Thank you.
Louie’s heart condition was detected at mum, Rebekkah’s, 20 week scan.
Louie would need life-saving surgery at Leeds after he was born and CHSF were there to ease the family’s experience, providing vital assistance and comfort throughout Louie’s treatment and recovery.
Louie’s mum, Rebekkah, said:
I remember finding out at 20 weeks pregnant that Louie had a heart condition and I felt like my whole world fell apart.
The weeks leading up to his birth were very traumatic. We suffered from PPROM at 26 weeks, and Louie was born at the LGI at 33+6 weeks.
Preterm premature rupture of the membranes (PPROM) is a pregnancy complication. In this condition, the sac (amniotic membrane) surrounding the baby breaks (ruptures) before week 37 of pregnancy. Once the sac breaks, you have an increased risk of infection.
Louie was born with a heart condition called Coarctation of the aorta.
From then on, all the teams made us feel so at ease. Louie had to grow quite a lot until he could have his surgery, and it took 9 weeks before he was ready.
Children’s Heart Surgery Fund were amazing with us from day one! They visited us, did welfare checks, made sure we had everything we needed. They made sure that not only Louie was ok, but us as parents and our other two children at home were ok too.
“CHSF were amazing from day one! They made sure that not only Louie was ok, but us as parents and our other two children at home were ok too.”
CHSF also provided us with food vouchers and helped with cost of fuel as well as helping with accommodation when we had nowhere to stay, as we were miles away from home.
Louie had his operation and recovered amazingly; he actually came home 6 days post op!
He is now a bubbly, bright little boy with so much energy and is just lots of fun to be around. We are so thankful to CHSF for all they did and continue to do for us!
CHSF are still so supportive now and made the whole experience that little bit easier for us.
13 babies are born every day in the UK with a heart defect, making CHD the most common birth defect.
In our region alone, Children’s Heart Surgery Fund is there for over 17,000 babies, children and adults like Louie every year, who are living with a heart defect. We’re there to support their families too!
Help us to raise vital funds this #HeartMonth, by making a donation to our essential and life-saving work. Thank you.
When Ebony was born in September 2023, her congenital heart defect went undetected until she started to get very poorly at just over a week old.
Ebony was ‘blue-lighted’ from Scunthorpe to Leeds, where she had emergency heart surgery to save her life…
Ebony’s mum, Courtney, said:
“Our little girl was born on 13th September 2023 and we were sent home thinking everything was fine. 8 days later however, she went downhill very quickly. She turned purple and couldn’t breathe properly.
“We rushed Ebony to our local hospital in Scunthorpe where they told us they didn’t know what was wrong and we should prepare for losing our daughter.
“They did a scan of her heart, and they knew that the heart wasn’t working the way it should. We were then transferred to Leeds by Embrace. Our little Ebony’s organs had started to shut down and was still very touch and go if she would make the journey.
“Once at Leeds we were informed that Ebony had hypoplastic left heart syndrome and coarctation of the aorta as well as two holes – one in the top and one in the bottom.
“Without CHSF our time in hospital would have been a whole lot worse. We will be forever thankful.”
“When we were told this our world stopped. We had no idea what this meant or where we needed to go from that point.
“We met with surgeons and consultants in Leeds and we were informed that she would need open heart surgery to survive (Norwood procedure), but Ebony developed an infection which delayed the surgery.
“We were in PICU (paediatric intensive care unit) for a total of 11 days before we got the go ahead to have the operation. Because of how poorly Ebony had become we didn’t know what the outcome of the surgery would be…
“On 2nd October 2023, Ebony had a 7-hour operation and absolutely smashed it!!!
“Once out of surgery there were a lot of complications and a lot of up and down days, but a miracle happened and she started to get better!
“After a solid week of up and downs we got the clear to move onto Ward 51’s (children’s heart ward) high dependency unit (HDU) from PICU. I thought we were never going to get there.
“It wasn’t as straight forward as we had hoped but after 9 long weeks we were discharged and allowed home.
We are now in the process of getting ready for Ebony’s next surgery – her Glenn – around March 2024 time. So, it’s all systems go but Ebony is doing amazingly well and constantly has a smile on her face.
“Without Children’s Heart Surgery Fund our time in hospital would have been a whole lot worse. We will be forever thankful for all the hard work and the dedication from the team.”
13 babies are born every day in the UK with a heart defect, making CHD the most common birth defect.
In our region alone, Children’s Heart Surgery Fund is there for over 17,000 babies, children and adults like Ebony every year, who are living with a heart defect. We’re there to support their families too!
Help us to raise vital funds this #HeartMonth, by making a donation to our essential and life-saving work. Thank you.
From being diagnosed with CHD at just 3 days old to overcoming multiple heart surgeries, Abraham is a true heart warrior!
As well as funding our life-saving Heart Unit where he was treated, Children’s Heart Surgery Fund have played a crucial role in supporting Abraham and his family on his journey so far.
Abraham’s mum, Katherine, said:
Abraham was diagnosed with CHD when he was three days old. They found he had multiple heart defects, and we were rushed across to Leeds from Jessops Wing in Sheffield the following day.
Due to Abraham being born prematurely, he was too small for surgery, so we were cared for on neonates for three weeks until he had his first open heart surgery in “the hybrid” theatre.
For the first 12 weeks of his life, we thought he was going down the single ventricle route of surgery but by some miracle on the morning of his second open heart surgery his surgeon, Mr Jaber, came and told us he thought he can do a full heart repair.
A long 10 hours later, Abraham was out of surgery. Mr Jaber had worked his magic and he had repaired our boy’s heart.
However, his recovery wasn’t smooth to start with and one week later he had a pacemaker fitted as he was still in ‘heart block’ following his repair.
Heart block is a condition where the heart beats more slowly or with an abnormal rhythm. It’s caused by a problem with the electrical pulses that control how your heart beats.
A pacemaker is a small electrical device that’s implanted in the chest or abdomen. It’s used to treat some abnormal heart rhythms (arrhythmias) and sends electrical pulses to the heart to keep it beating regularly.
After this, Abraham flourished, and he grew stronger and stronger.
As we left hospital the aim was to get Abraham to his first birthday before we discussed any further surgery. Abraham way exceeded this and on the 5th January 2024 he had his third open heart surgery, aged 4 years 7 months old.
In this surgery he had a resection of his aortic valve membrane and his pacemaker replaced (he is pacing himself and was pre-surgery too).
On writing this, he is now 20 days post-surgery and doing amazingly!
Children’s Heart Surgery Fund have helped us so much throughout our journey as a family, navigating the new world of CHD.
Without their support we wouldn’t have been able to stay close to Abraham during his time in hospital. His first admission was for 16 weeks. We were helped financially during our first admission too, which was a great help as living in hospital isn’t cheap.
Abraham also loves his Katie Bears and certificates!
CHSF gives us opportunities to meet other heart mums and dads. We enjoy meeting and talking to other parents who share the same experiences as us. As Abraham gets older, I believe he will benefit from meeting other children who have gone through what he has too.
On our latest admission it was lovely to meet Family & Youth Support Worker, Lucy!
Written by mum Jessica
Gracie was born on the 30th September 2022, weighing 6lb 4oz and this is where our journey began…
Within 72 hours of Gracie being born and spending time on NICU, we found out Gracie had Tetralogy of fallot, VSD and an ASD, which is all congenital heart defects. This was when we were told she would need a very important open heart surgery at 6 months old to fix her diagnosis.
Through advice and learning about it all, we found out 80% of people with this diagnosis have this operation and carry on to lead normal happy healthy lives. When Jordan and I found this out, we knew it was going to be a very tricky, emotional, and tiring journey but with a light at the end of the tunnel.
Three weeks later in NICU, with myself learning how to do Nasogastric (NG) feeds and after Leeds Children’s Hospital confirming Gracie’s diagnosis, we were finally able to take Gracie home and start as a family of four. We were able to accept lower sats due to how her heart was formed, as well as knowing how weak she was – that’s why she was NG fed due to her tiredness.
NG feeding is where a narrow feeding tube is placed through your nose down into your stomach.
We had a lovely cardiac specialist nurse, Nikki, whose role was funded by CHSF. Nikki came to the house every week to make sure Gracie was maintained at above 75% and gaining weight nicely. She was my go-to nurse on standby, so if anything was wrong with Gracie, we knew we could call her. We also had open access to the Rainforest Ward at Grimsby hospital in case we were worried or concerned about anything.
Here we had a good month at home until the break between Christmas and New Year. Gracie turned really poorly, and we found out she was diagnosed with bronchiolitis. We weren’t admitted as there was nothing they could have done for a newborn, but we were sent home knowing that this could be the start of a very long journey in hospital for us.
Two weeks later, Gracie gave us a huge scare. She was still fighting on-going infections as well as her SATs dropping to below 60%. This is where we found out she had started to have ‘tet spells’.
Some babies with Tetralogy of Fallot suddenly develop deep blue or grey skin, nails, and lips. These episodes are called tet spells. Tet spells are caused by a rapid drop in the amount of oxygen in the blood.
We were rushed from Grimsby to Leeds Children’s Hospital’s paediatric intensive care unit (PICU).
Here Gracie was taken straight off to the Cath lab to insert a small plastic tube to open up the thinner part of the valve within her heart and to keep it open for the blood supply to flow back to how it normally would. Afterwards, Gracie’s recovery went really well. We were out of Leeds within a week and, again, we started our lives as a family of four – round 2!!
Between January and May, Gracie lived pretty much at Grimsby hospital as well as going back-and-forth to Leeds Children’s Hospital battling a range of respiratory infections. As her heart was weak, the infections kept coming back continuously, and her little body was unable to help them without support. Here Gracie was battling a range of respiratory infections which included: Covid rhinovirus, pseudomonas, bronchiolitis and Norovirus. She continuously needed oxygen as well as medication to help battle these viruses and needed 24/7 nurse care.
After a 10 week stay at Grimsby Hospital…the end of May soon came around where Gracie was finally transferred over to Leeds Children’s Hospital where they were going to do another Cath procedure. This was to see whether they could extend the tube that they had inserted in January, to see if that could help her in anyway…
They also needed to find out why Gracie could not be weaned off oxygen without her SATs dropping below 75%, as well as why she wasn’t getting any better… Gracie went down to the Cath lab but this resulted in them not doing anything and returning back to the ward due to the heart twisting too much to get to the tube. Back to stage one of not knowing what was going on.
We then found out they were going to have a meeting to decide whether Gracie was strong enough for her full heart repair. Gracie also needed a CT scan to find out why we could not wean any oxygen from her. A couple of days later, after the CT scan, it showed compression on her airway, and the cardiac surgeons agreed to put her on the acute list for her full heart repair. Within this timeframe, Gracie remained at Leeds Children’s Hospital on the ward, waiting for her operation. She was still on oxygen but just being her happy normal general self. When we found out her operation date, Jordan and I went in the day prior to talk to the cardiac surgeon who would be doing her operation. They explained all the pros and cons, how long it would be, and to also sign a consent form… Gracie had to have three detergent washes (sterile for surgery) and a final sleepover with Nanny before her big important day.
Operation day… I remember Gracie looking so lovely on the morning of her operation day in a strawberry jumpsuit. It was the hottest day of the year and me and Jordan were a nervous wreck. She was happy. She was smiling. She didn’t have a clue what was going on that day and now the time had come where Jordan would walk Gracie down to the theatre.
He stayed with her until she was put to sleep and then he walked back to the ward. Here we knew we had a minimum of seven hours until we heard back from the cardiac surgeon with a result.
4 hours into surgery, the cardiac surgeon rang Jordan and stated that they found a vascular ring around her windpipe which was why we couldn’t wean her off any oxygen.
This meant they not only had to open her from the centre of the chest, but they would also need to open her from the side to remove the vascular ring. Me and Jordan were now thinking of the worst, not having a clue what was going on in theatre. 7.5 hours later we get the call from the cardiac surgeon to say the operation is complete. The vascular ring has been removed. No complications apart from the vascular ring being found and Gracie will be onto PICU ward within the next half an hour.
Once we got up there, we saw Gracie laying on the bed. She was on a ventilator with loads of wires and tubes and equipment all around her – it was a very scary moment …but the relief of seeing SATs of 96.97% on the machine was amazing! I cried with joy, knowing that we have had such a rollercoaster. This was finally the light at the end of the tunnel, and we could hopefully go home within a week with a happy healthy baby girl…
They tried to extubate within 24 hours, but Gracie’s SATs were dropping low on high flow oxygen. She had to be re-intubated to have another few days’ rest, and they would try again in three days’ time. Three days’ time came along. She was extubated again and was doing well. However, at this point we found out Gracie had contracted another respiratory infection, rhinovirus, which made her SATs go doolally again. We were at the stage where Gracie had to be intubated again – round three.
From then we struggled to wind down the ventilation pressures and the PICU consultants, cardiac surgeons, a specialist heart nurses had to have a big meeting to find out why. This resulted in giving Grace a further two weeks and if there was no progress, we knew something was wrong, so she would have to be taken down for a bronchoscopy to find out why.
In regard to her respiratory infections, she always used to suffer with a right upper lung collapse throughout x-rays. The doctors and nurses could see it used to go up-and-down like a yo-yo. This was due to the constant respiratory infections and this was where they are found out it had done some permanent damage. The bronchoscopy was done under anaesthetic in theatre and we found out that she had a collapsed airway and a flattened windpipe. The reason for this was because her aorta was applying pressure to her lungs, so Gracie was then booked in for an aortopexy operation. This is where they move the aorta away from the chest wall to hopefully lighten the airway pressure. We were told if this didn’t work and ventilation was still unsuccessful, Gracie would’ve had to have a tracheostomy.
Tracheostomy is a procedure to help air and oxygen reach the lungs by creating an opening into the trachea (windpipe) from outside the neck. A person with a tracheostomy breathes through a tracheostomy tube inserted in the opening.
The day came for Gracie to go down for her aortopexy, and within a couple of hours the surgeon called me to say it had all gone well and smoothly and Gracie was back on PICU. Again, another big sigh of relief for me and Jordan knowing that again, this was the light at the end of the tunnel and, again, we would be on our way home to be a family of four.
The next morning, we got a dramatic call from one of the staff nurses saying we needed to get up to PICU ASAP. Gracie’s SATs kept dropping to 50% or below. No one knew why and in the end she was 100% oxygen on the ventilator, followed by a nitric gas which helped open up blood vessels for oxygen to flow better (this was also at maximum amount).
At this point, Gracie was still reaching SATs of 85% – nowhere near what she was a couple of weeks ago. We knew we really need a CT scan; however the nitrogen gas was not transportable so we did a trial run – half an hour without it. At this point, Gracie was too unstable to move. We found out then she was back off to the Cath lab as they could do it via a Cath procedure. A Cath procedure normally takes between 45 minutes to an hour and so me and Jordan knew five hours later that something wasn’t right or was not good.
We finally had an in-depth conversation with the cardiac surgeon, the Cath lab surgeon and a PICU consultant who told us that Gracie’s right ventricle in the heart had been blocked. They rushed her into theatre to reverse the aortopexy she had had the day before, but we found out that made no difference. At this point, we knew Gracie was critical.
We were told that she was not allowed to be moved due to being too unstable. Jordan and I had to say our goodbye’s again to her in theatre, where we were told for family to come up because we didn’t know if she will make it out the theatre doors – we were told to prepare for the worst. Gracie was in the operating theatre for 16 hours, resulting in finally coming back to PICU and going down to the Cath lab again in a further six hours’ time to find out whether the operation to was successful. That afternoon we found out it wasn’t.
When Gracie finally came back to PICU, she was placed on a machine called ECMO where the machine was doing the work that her heart and lungs would be doing. The machine was there to give her heart and lungs complete rest for up to 10 days and honestly those 10 days came around pretty fast.
Before we knew it,we were back in another room, Monday morning, having another conversation with PICU consultants and cardiac surgeons. This was where we had another scare as we were told it was time to get Gracie off ECMO, redo the aortopexy operation and to hopefully find a balance. At this point, me and Jordan knew how poorly Gracie was and, again, they told us to prepare for the worst – with an 80% chance Gracie wouldn’t make it back to PICU alive.
At 4pm I had a phone call from the cardiac surgeons to say Gracie managed to come off ECMO successfully and we would be able to see her back at PICU within half an hours’ time. She managed to surprise everybody considering how poorly she was coming off ECMO and carry on fighting. I’ve never seen so many machines, tubes and wires on our Grace in all my life. Gracie was on 16 different medications, followed by blood, fluid and painkillers. Once again, Gracie surprised us all, and once again another light at the end of the tunnel and once again one step closer to home.
We were doing ever so well until one day Gracie’s tummy and liver started to build up continuously with fluid, and it was getting bigger and bigger by the day. The medicine used for this type of condition was not working and they had to put a drainage incision into her tummy to release the fluid. Due to the pressure of the fluid on Gracie’s vital organs, Gracie SATs were dropping again to the point where we had to put Gracie on her front to help with the pressure.
We got to the stage where we were losing 2000mls a day (nearly a full bottle of cokes worth a day) and when me and Jordan arrived back at the hospital, Gracie went into cardiac arrest. It was so weird! She’d had such a good weekend. It was like she waited for us to arrive and BOOM, off she went. They brought her back, however, they realised the cardiac arrest was due to the blood vessels being starved of fluid due to the fluid all being retaining in one area.
Once again, another scary night ahead where me and Jordan didn’t sleep as we were sick to death with worry. The morning came and we found our Gracie had a stable night but we were pulled into a room for another very important chat. At this point, Gracie had maxed out all the medicines, all the blood pressure medication and all the painkillers and now this was a conversation where me and Jordan had to agree with the doctors that there was nothing more they could do. If Gracie had another cardiac arrest we would have no option, but to let nature take its course, for Gracie’s dignity.
This was when we agreed to do a respect form. This is where if Gracie’s SATs drop and her heart rate stops not to perform CPR. Again, the family were called out to come and say their goodbyes for the third time round. She was put into her own room, in a big girl bed where everyone could get on and have a snuggle and be close to her… However, a couple of days later Grace surprised us all once again by fighting through and the amount of fluid she had was coming down by around 200mls a day. Gracie was showing signs of improvement. She came off all her blood pressure medication and paralyse medication and was slowly weaning down on her painkillers. It was like it randomly all kicked in at once, she just took her time getting it to work…
At this point, me and Jordan had a very in-depth chat with Gracie’s consultant, and we agreed that with Gracie now doing so well, we were able to take the CPR respect form off… Again, just as we thought there was light at the end of the tunnel with a very positive and good conversation with the consultants… that night Gracie started having seizures. They were ongoing and continuous to the point where very strong seizure medication was the only thing able to help Gracie stop these. Due to the seizures, Gracie was then wheeled down that night for another CT scan to find out what was going wrong.
Here we found out Gracie had a buildup of fluid around her brain, along with bright patches inside of the centre of her brain. (They thought this could have been due to being on ECMO.) Her neurologist came to talk to me, saying Gracie will be taken down to theatre again to have a small plastic tube inserted into her brain so they could release the pressure daily. We were told sometimes it works, sometimes it doesn’t but in Gracie’s case they were going to give anything a go.
The procedure they did was quick, and Gracie came out within an hour of theatre. The recovery was going well, however, in a matter of two or three days the drain was blocked. At this point, Gracie’s head and face was so swollen she didn’t even look like our Gracie anymore.
A couple of days later, me and Jordan saw the PICU consultant neurologist. We had a very in-depth chat about what was happening with Grace’s brain.
Here we were told the bright patches were due to her latest resuscitation episode where the brain was starved of oxygen for a couple of minutes, however, it was survivable. It would mean that Gracie would’ve lived with cerebral palsy and me and Jordan were happy with that considering everything else she had been through! We knew we would give her the best life with whatever she had. Then she spoke to us about Gracie’s brain, stating that she had substantial swelling which would just build and build and build, to the point where her brain will then start to cone. This means that Gracie’s brain would start to move to compromise the pressure. PICU class this situation as ‘terminal’.
This was when me and Jordan knew that was it. We knew after everything that’s gone on with Gracie, there was literally nothing more they could do, and there was no light at the end of the tunnel.
After a very heartbreaking chat, we agreed that for Gracie’s best interests, her dignity, her pride and her fighting attitude that she was too tired to fight anymore. We agreed that there was nothing they could do for Gracie, and we had to start end of life care. Here me and Jordan met up with some lovely people from Martin House based in Wetherby who deal with end-of-life care facilities, and they would have looked after Gracie until it was her time to go. At this point, we made memories! Lots of memories! We made stamps of our hands and our feet, making them into little butterflies and bees. Me and Jordan did some model making of her holding mummy’s and daddy’s fingers which she used to do! We had lots and lots of cuddles, and dances and singing to our favourite songs. As well as all the nurses had a chance to say goodbye to Gracie.
Before you knew it, the dreaded day arrived where we had to move Gracie from PICU to Martin House hospice. Gracie had a pretty pink babygrow on with little pink Ugg boots and a little pink cat, she was all wrapped up with her teddies and blankets.
Gracie lived on PICU for four months. Gracie touched many of the nurses and consultants’ hearts and they made a lovely picture of a tree with every nurse’s fingerprint acting as a leaf. On Gracie’s last journey, they lined up through the corridor, hugging, blowing kisses and clapping for Gracie. Gracie took her final walk out of PICU and all the nurses knew how much of a fighter she was!
I remember I was with my sister in the car on the way to Martin House, and I had every emotion running through my body. I knew by that evening; my little girl was going to go over the rainbow and there was absolutely nothing I can do about it. It was one of the hardest journeys I’ve ever had to make however once we arrived we settled down and Gracie was placed on her dad for a final cuddle.
We agreed for all machines and wires to be taken off. That was when Gracie was free, and she would go naturally when it was her time to go.
As soon as the ventilator was taken off, I remember Gracie doing the biggest yawn ever! I think that was her telling us that she was too tired now and it’s her time to go. At that point, I picked Gracie up and we went and sat outside in the garden. She was cuddled in blankets, and I had her on my chest. We watched the leaves blowing in the wind and the squirrels taking the apples off the trees. Within five minutes, Gracie took her final breath and went over the rainbow.
Close family and friends were there with us, and everybody had a chance to say to say goodbye to Gracie before she had to go.
Me and Jordan were open and honest with Gracie’s story from the start. We had people follow us and our journey from all over, sending strength and courage to keep going for our little lady. We knew we wanted to raise awareness for anybody going through, or who was in the same situation as ours, knowing they are not alone.
Gracie was loved by everybody. Gracie did everybody so so proud. Gracie deserved the world and more – me and Jordan love Gracie as big as the sky. We will do everything in our power to make her proud, to keep her name going and to let her legacy live on forever. If anything, through Gracie story, Gracie has shown that no matter what situation you’re in, no matter how bad it gets, never give up.
When we came home it was so abnormal. We saw the biggest rainbow on our final journey home from Leeds and we knew Gracie was up there with bunny and we knew she was telling us she was okay.
In Gracie’s name, we will carry on raising money for the Children’s Heart Surgery Fund who helped me and Jordan throughout our whole stay at Leeds Children’s Hospital. They provided us with accommodation, food vouchers and fuel vouchers – so we could go home and see our son Alfie.
All this along with chats, meeting up for coffees and for a general bit of normality outside of Gracie’s situation. It’s people like the Family Support team at CHSF that you don’t realise what they do for you until you are actually there in that moment. Me and Jordan know how much they helped us and how much they meant to us through Gracie’s entire life.
We know that without them, we really would’ve struggled as a family, considering we live 2.5 hours away from Leeds. One example is when we took Gracie in for a routine check-up. Gracie’s SATs were below 75% which meant we had to stay in Leeds. We had absolutely nothing with us apart from Gracie’s changing bag and CHSF came up, had a chat and provided us with everything we needed to stay, such as toiletries, food, a change of clothes, p.j’s and so much more…
In Gracie’s honour, we will carry on Gracie’s name. We will carry on doing her proud, and we will carry on raising as much money as we can for this amazing charity who helped us throughout all of Gracie’s life.
In regard to the CHSF-funded accommodation, a hotel in Leeds was around £100 a night, estimated around £700 a week… That’s £2,400 a month we would have had to spend on hotels to be near our Gracie! It’s crazy! But CHSF gave us a huge gift with their free accommodation which we stayed in for around 16 weeks in total. Without this, again, we would have really struggled!
At the time of writing this we have already raised nearly £3,000 since Gracie’s death!
As well as donating to CHSF, we also bought PICU some Gracie Mae sound machines.
Gracie was always known for her continuous White Noise, spa, music, or Disney tunes and so we wanted to spread Gracie’s memories all over PICU, resulting in giving the specialist play nurses ‘Gracie’s Box’ to give to children on PICU in time of need, for comfort or support. As well as this we have delivered sweets and chocolate selection boxes for Christmas to ward L51 and PICU. Alfie (Gracie’s big brother) helped by handing them out dressed up as Santa’s little elf and the children, and especially some of the parents were very impressed!
Once again from the bottom of our hearts, me and Jordan would like to thank everybody who has been there, who has supported us and who has helped to raise money for Gracie’s charity Children’s Heart Surgery Fund! We thoroughly appreciate it, and we cannot thank you all enough. CHSF are an amazing charity and without them, times would have been very very tough that’s for sure.
All I will say now is that Gracie Mae and her story is a true inspiration to us all and remember, never give up
Helen was born in 1989 with a congenital heart defect. She lived in Hull with her mum, dad and sister, but would need heart surgery at Killingbeck Hospital in Leeds (over 60 miles away) to save her life.
Heart mum Lesley sent us an amazing story about her daughter Helen, and their experiences of the heart unit and CHSF parent accommodation – back when our charity had only been running for a year!
Lesley said:
“My husband Trevor, our eldest daughter Ruth and I spent a lot of time at Killingbeck Hospital in 1989.
“Our youngest daughter, Helen Sarah was born on 5th April 1989 and was transferred from Hull Royal Infirmary to Killingbeck on 14th June. She needed a TAPVD repair.
“During the time we had to wait for an intensive care bed, I spent some time staying in the nurse’s home or visiting with Trevor and Ruth. We spent time with Helen on the ward in the playroom and in the grounds of the hospital.
“It was very important to be able to spend this time as a family, especially for Helen’s sister Ruth who was only three.
Helen’s whole family were able to stay close by thanks to CHSF-funded accommodation
“…the support we were given at Killingbeck, was second to none. Being able to stay onsite…able to be with Helen as much as we could, made the whole experience much easier to cope with.”
“When Helen had her operation on 28th June, Trevor and I were able to stay in the relative’s house funded by Children’s Heart Surgery Fund and we could visit Helen in intensive care any time of day or night.
Helen’s sister Ruth celebrated her 4th birthday while the family were living at the hospital – the canteen at Killingbeck made her a birthday cake!
“Especially with us living in Hull, this facility was much-appreciated and made a very stressful time much easier to cope with.
“As well as the house we could also use the canteen – the staff were so caring, and food was great. When Ruth spent her 4th birthday visiting Helen, the canteen even made her a cake!
“The care Helen received, and the support we were given at Killingbeck, was second to none – before during and after her operation.
“Being able to stay onsite in both the nurse’s home and the house, and being able to be with Helen as much as we could, made the whole experience much easier to cope with.”
“Helen is now Mrs White and, along with her husband Luke, has two children of her own – Jackson aged three and Remi who is five months. “She is definitely a Killingbeck success.”We are incredibly grateful to Lesley, Helen and the whole family for allowing us to tell this story. It shows how CHSF’s parent accommodation has always been so important to parents in their hour of need.
CHSF was only able to offer this help back in its early days thanks to public donations. Please help us right now to continue giving a vital home-from-home to heart families when they need it most.
Since our charity was founded in 1988, we estmate that around 10,000 families have stayed in CHSF-funded accommodation.
13 babies are diagnosed with congenital heart disease in the UK every day. This year alone we have supported double the families that we did in 2022.
We need to raise at least £10,000 every year to fund CHSF accommodation.
Please donate what you can to help us reach our goal and ensure heart families like Helen’s can #StayAnotherDay.
If you can go the extra mile (so heart parents don’t have to), please consider setting up a regular gift to CHSF to enable more families to #StayAnotherDay throughout the year!
Set up a direct debit to CHSF…
CELEBRATE CHRISTMAS WITH CHSF
Have a festive flutter on the 2023 Christmas Raffle, or maybe you could buy a pack of Xmas cards. Want a challenge? You can Step Into Christmas by walking a marathon in December, or Jingle All the Way to 5K with Team CHSF!
The most wonderful time of the year is almost upon us again. Can you help us be there for heart warriors all year round?
Visit our Christmas page to see more ways you can support CHSF this festive season!
Heart hero Harry had life-saving open heart surgery at Leeds, in October this year.
From Harrogate, mum Shawney tells us a bit more about the brilliant work of the Leeds Congenital Heart Unit and how their family were looked after in CHSF-funded accommodation while Harry was being treated, meaning she could always be a stones-throw away…
Shawney said:
“Harry had his surgery on the 23th October 2023 to close his ventricular septal defect (VSD) and atrial septal defect (ASD).
“Both were detected after a murmur was picked up at birth.
“Harry spent some time in the Paediatric Intensive Care Unit (PICU), followed by HDU (High Dependency Unit) before being moved onto the children’s heart ward (L51).
“He was home after just 7 days.
About Ventricular Septal Defect
About Atrial Septal Defect
“We stayed for three nights in Brotherton Wing. It made it so much easier not having to be away from Harry.”
“We stayed for two nights in a room while Harry was on PICU, then we stayed for three nights in CHSF-funded rooms on the Brotherton Wing.
“It made it so much easier not having to be away from Harry after his surgery, and also meant I could continue to feed Harry myself.
“It would just be a call when he was due, and I could just nip to the ward!
Harry at home after his surgery with his Katie Bear teddy and medal
“Every single person involved in Harry’s care over his stay were truly incredible.
“It was the most terrifying time of our lives but the amazing network of staff and support from other parents made it so much easier!
“We continue to have check-ups but fingers crossed everything is going well! Huge thank you to all involved.
Since our charity was founded in 1988, around 10,000 families have stayed in CHSF-funded accommodation.
13 babies are diagnosed with congenital heart disease in the UK every day. This year alone we have supported double the families that we did in 2022.
We need to raise at least £10,000 every year to fund CHSF accommodation.
Please donate what you can to help us reach our goal and ensure heart families just like Harry’s can #StayAnotherDay.
If you can go the extra mile (so heart parents don’t have to), please consider setting up a regular gift to CHSF to enable more families to #StayAnotherDay throughout the year!
Set up a direct debit to CHSF…
CELEBRATE CHRISTMAS WITH CHSF
Have a festive flutter on the 2023 Christmas Raffle, or maybe you could buy a pack of Xmas cards. Want a challenge? You can Step Into Christmas by walking a marathon in December, or Jingle All the Way to 5K with Team CHSF!
The most wonderful time of the year is almost upon us again. Can you help us be there for heart warriors all year round?
Visit our Christmas page to see more ways you can support CHSF this festive season!
Olly is 9 years old and he had open heart surgery at the Leeds Congenital Heart Unit this year.
On 4th February this year, Olly was admitted to hospital with breathing difficulties. He didn’t come home for 48 days.
Many of those days were spent in an induced coma, on a ventilator in Leeds Children’s Hospital PICU (Paediatric Intensive Care Unit) – Olly was suffering from heart failure.
Olly’s mum Helen told us a bit more about his condition…
“A defective mitral valve, likely congenital, meant Olly needed open heart surgery to fit a mechanical replacement valve. The surgeon in Leeds performed this procedure just under a month after Olly was admitted, on 1st March.
“Following his operation Olly’s condition improved. However, the 3 weeks spent in PICU before surgery meant his muscle mass was significantly depleted and he had become dependent on the sedatives required when he was ventilated.
“This meant a long weaning plan and lengthy rehabilitation post-surgery.
“Having always been an active child that showed no signs of any issues, the speed at which Olly deteriorated was a huge shock to us all.”
Olly’s mum, dad and brother Robert stayed in CHSF-funded accommodation at the hospital. Having family so close by for the 48 days he was in hospital really help Olly to recover.
During this time, Olly’s mum, dad and brother Robert were able to stay in CHSF-funded family accommodation as they live nearly an hour away from Leeds. This meant Olly had his whole family close by while he recovered in hospital.
Olly is now home and as well as completing his own fundraiser for CHSF earlier this year (just four months after his surgery!), he has also been helping us to promote our Christmas Campaign for 2023, ‘Stay Another Day’.
Olly writes:
Hello I’m Olly and I’m 9.
I was in hospital in Leeds for 48 days with heart failure this year, I needed to have heart surgery, which was scary for me.
We live in Addingham, which is nearly an hour from Leeds. My mummy and daddy were able to be near me because they could stay in Leeds. The room they got even meant my brother, Robert, could stay too. Seeing them all the time really helped me get better.
Since I got home, I have raised money to give back to charity to thank them for their help. Please can you give money to charity this Christmas? They can make sure other mummies and daddies are near their poorly children when they need them most.
Thank you, Olly
P.S. Merry Christmas!
Since our charity was founded in 1988, around 10,000 families have stayed in CHSF-funded accommodation at the hospital.
13 babies are diagnosed with congenital heart disease in the UK every day. This year alone we have supported double the families that we did in 2022.
We need to raise at least £10,000 every year to fund CHSF accommodation.
Please donate what you can to help us reach our goal and ensure heart families just like Olly’s can #StayAnotherDay.
If you can go the extra mile (so heart parents don’t have to), please consider setting up a regular gift to CHSF to enable more families to #StayAnotherDay throughout the year!
Set up a direct debit to CHSF…
CELEBRATE CHRISTMAS WITH CHSF
Have a festive flutter on the 2023 Christmas Raffle, or maybe you could buy a pack of Xmas cards. Want a challenge? You can Step Into Christmas by walking a marathon in December, or Jingle All the Way to 5K with Team CHSF!
The most wonderful time of the year is almost upon us again. Can you help us be there for heart warriors all year round?
Visit our Christmas page to see more ways you can support CHSF this festive season!