November is 22q11 Deletion Syndrome awareness month. Also known as DiGeorge syndrome, this syndrome is one of the most common reasons for cardiac problems in babies.
The condition is rare and before having daughter Sophia, heart mum Charlotte had never heard of the condition.
We reached out to Charlotte to ask whether she would help us to raise some more awareness of 22q11…
When Sophia was born it became obvious that something wasn’t right, and it was quickly identified she had a complicated cardiac problem.
At four days old, Sophia underwent open heart surgery. Whilst in surgery they noticed Sophia also had a missing thymus. This, along with the cardiac problems, prompted them to carry out tests for DiGeorge syndrome.
A couple of weeks later, I was taken into a room to be told she had the syndrome. The key takeaway would be NOT to Google it and to contact CHSF and Max Appeal to understand more…but as I had never heard of it before, I made the huge mistake of searching the web.
The information I found terrified me! I have since found that they were correct with the advice not to Google. With the condition being classed as ‘rare’ (although it is the second most common chromosome disorder after Down syndrome) the internet is not up to date or accurate and, as far as I can see, provides only absolute worst case scenario information.
Sophia hasn’t had it easy at all, but she continues to amaze everyone every day! Especially me – I am one super proud Mummy!
The condition is a huge spectrum and can have up to 180 variants of things that people with the syndrome may or may not have wrong with them. Examples of things which I have heard are common are: cardiac defects; cleft palette; learning and developmental delays; autism; hyper mobility; immune problems…plus many more.
So far, along with being cardiac, Sophia is delayed reaching some milestones, but she always gets there, in true Sophia style!
She’s 2 1/2 years old now and is non-verbal at the moment but she’s doing great with Makaton. A few words have started to come, such as “mummy”, “more” and “yes”. I have no doubt there will be no stopping her talking soon enough!
Her immune system is on the low side of normal, so she does pick up a lot of bugs but she’s a fighter! She also has a feeding tube, but we are getting there with transitioning to oral feeding and drinking.
Sophia has a world of support around her. She sees A LOT of medical specialists, which I feel we have been super lucky to get, and we attend loads of appointments. But this means Sophia is getting the best care in the world and that’s all that matters!
She has recently been approved an EHCP (Education, Health and Care Plan) which will massively help throughout her education. As she recently started pre-school (which she LOVES) this will help give her the best start ever!
I don’t think there are too many medical specialists around here who have an in-depth understanding of DiGeorge as I often have to explain the syndrome to people that we see. I think it would be amazing if there was a local DiGeorge clinic as there is in London. I would love to be able to regularly see someone who can help us on our journey with DiGeorge.
The Max Appeal charity is the best source of information for the syndrome and has been absolutely invaluable to our family so far. We are part of their Facebook community which means families can discuss our children together and get advice and support.
We have also met up with and made friends with many other families who have children with DiGeorge in the local area (it is a lot more common than you would realise). Seeing how amazing all the other children are doing fills me with so much hope for Sophia’s future.
This group, along with the Children’s Heart Surgery Fund Facebook community means we have constant support, and always someone we can go to!
This has just been a little information from my perspective as a mummy of a 22q deletion warrior! I wouldn’t change her for the world (although I’d make her journey a little easier if I could).
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“CHSF has helped us so much. Thank you for everything you have done for us. It’s really helped having the extra support at a such hard time.“
Written by heart mum, Chelsea Machon
My partner Matthew and I found out that Blake had something wrong with his heart when he suddenly was really poorly on 30th September 2022.
We took him to Chesterfield Hospital to be seen and Matthew and I were told he had sepsis as well as two big infections. We were told he needed to be put on a ventilator and taken to Manchester to be in intensive care.
Once we were in Manchester, we found out Blake had a heart condition called mitral valve regurgitation. It was severe and need to be operated on.
After a week in Manchester paediatric intensive care unit, we were transferred to Leeds Children’s Hospital where Blake was seen by the cardiac surgical team straight away. They came up with a plan to operate as soon as possible which was very scary for me and Matthew.
Blake had his first open heart surgery on 13th October, and his second on 25th October to have a mechanical valve put in.
Children’s Heart Surgery Fund has helped me and Matthew so much.
They brought us toiletries when we arrived at Leeds and had nothing with us.
When we were low on funds they helped us with travel costs. This meant that our family could come up to Leeds support us when we needed it most.
Thank you for everything you have done for us. It’s really helped having this extra support at a such hard time.
It is only with your continued support that we can keep being there for more families like Chelsea, Matthew and Blake.
We can only do the work we do, because of you.
We appreciate the cost of living crisis is affecting us all, including families of the 1 in 100 babies who are born with congenital heart disease every day.
CHSF are incredibly grateful to everyone who continues to donate. If you are able to set up a regular payment to CHSF during these challenging times, we promise every penny will go towards supporting hearts for life.
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“When we got to Leeds it was very emotional, I just remember most of it being a blur. We would wander around trying to distract ourselves, watching this tiny little boy sleep without a care in the world.”
Heart warrior, Issac’s CHD wasn’t detected until after he was born. Heart mum, Stacey, tells us about her family’s experience of heart surgery at Leeds…
written by mum Stacey
Issac was my first pregnancy, and everything seemed to be going fine throughout its duration.
Issac was born at 40+3 and it was a very quick birth. We stayed in hospital, and it was his baby checks that flagged up a heart murmur, but nothing concerning. He was checked again on day two and the murmur was still there but had quietened down. We got referred for a follow up at seven days old where it would be discussed if he needed to be seen further.
Day 7 came, and the murmur was still present. Someone was definitely looking over us on that day because the neonatologist who we would have been seeing months down the line was free that very second and agreed to see Issac.
This is where we discovered that Issac had a large ventricular septal defect (VSD). That’s when we sat and reflected on how he was from birth until that day, as he was showing signs of struggling; the poor feeds, the poor colour in him. They were all the classic signs of his heart condition, but these were brushed off that I was just an over-cautious, first-time mum.
Issac was referred to Dr Willcoxson from Leeds, but he remained under our neonatologist who monitored him very closely. After a very intense 11 weeks, a decision was made that Issac was going to need surgery. He was given medication and a lot of care throughout this journey.
I read a lot of stories that were full of disappointment for families who were awaiting surgery, but they kept being cancelled.
It was a Tuesday afternoon; I got a call to say Issac’s case had been discussed amongst surgeons and agreed surgery was going to happen that very week. We had to be in Leeds on the Thursday, ready for surgery the Friday.
Those 48 hours were the longest. We got packed and ready. We got halfway to Leeds, and I got a call cancelling the operation. They said the surgeon had been in an emergency and he couldn’t perform Issac’s surgery. Fortunately, we got booked in for the Sunday and his surgery did go ahead on the Monday.
When we got to Leeds it was very emotional, I just remember most of it being a blur. We would wander around trying to distract ourselves, watching this tiny little boy sleep without a care in the world.
We visited PICU briefly and that’s where it hit us hard. All these tiny children hooked up, children in their own rooms…we soon left and went back to our ward.
I had my bloods done for genetic testing. We bathed Issac and made sure he was ready for his big day.
The Monday came and it was just a day of emotions. I think I cried for days. I made his dad sign all the paperwork. All the meetings with the nurses, the surgeon and the anaesthetist were a blur. I didn’t want to listen to any of it. When the psychologist came in, I’m sure I told her to leave me alone.
When Issac went into theatre it was the worst. I walked out of the hospital and went into Leeds. I was checking my phone every five minutes, waiting for the call to say he was out and okay. Three hours felt like days!
We went back to our room as we had to leave the heart ward until Issac was back on the from surgery and on HDU. We got all our stuff and moved it to the accommodation. Once sorted we ate, had a shower and no sooner had we got ready I got the call. Five hours after leaving Issac, he was out of surgery and in intensive care.
No sooner had we hung up the phone, we were running to the unit to see him. Issac was already showing signs of recovery, trying to tug his tube.
He was on a ventilator for about 12 hours in total, which meant he was good to be moved to HDU on the heart ward on the Tuesday evening. The only issues he faced was he had to continue having small amounts of oxygen for most of the week.
His feeds were slowly getting better. He was moved to his own room within four days, and we were discharged just two days after.
Babies are amazing and they go from strength to strength. Isaac was 13 weeks old when he had his surgery, and he is now 9 1/2!
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.
Feedback from heart patients and families tells us your story will help others dealing with a diagnosis of CHD to realise they are not alone and that there is support available from CHSF.
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…
“We will never be able to repay what they have done, and continue to do, for us.”
From a place to stay while son, Arthur, was having surgery, to being able to monitor oxygen levels once they got home, heart mum Jessica recounts all the ways her family have been supported by CHSF…
written by mum Jessica
At our 20-week scan, the sonographer recognised the right side of my baby’s heart to be severely underdeveloped compared to the left side.
We were seen in Fetal medicine at Leeds the following day to which we received Arthur’s diagnosis of hypoplastic right heart syndrome (HRHS).
After many trips to Leeds to meet with the Fetal team, everything was in place ready for Arthur’s delivery.
Over the course of 18 weeks, we educated ourselves on his condition and what could be offered to help him.
From delivery and his first procedure at two days old through to open heart surgery at six months old, Children’s Heart Surgery Fund provided us with somewhere to stay to be near Arthur.
Having this accommodation, meant we didn’t have to travel back and forth to Rotherham and allowed us to be near our little boy whilst he underwent his operations.
Two weeks after Arthur was born, we were allowed to fetch him home and monitor his oxygen saturations with a monitor provided and funded by Children’s Heart Surgery Fund.
Without this monitor, we would’ve never known if Arthur was struggling and how his heart was coping.
CHSF also provided us with a care pack for both stays in hospital and after his open heart surgery, he received a Katie bear, medal and certificate for his bravery – of which we will very much cherish forever.
Children’s Heart Surgery Fund continue to support us on Arthur’s journey, as well as the team at Leeds. We will never be able to repay what they have done, and continue to do, for us.
We’ve now enjoyed 14 months with Arthur making memories together. He enjoys nursery very much and in a few short weeks he will become a big brother!
Thank you for all you do. Both the team at Leeds, especially Dr Jamie Bentham and Mr Osama Jaber and Children’s Heart Surgery Fund. You are real life angels.
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.
Feedback from heart patients and families tells us your story will help others dealing with a diagnosis of CHD to realise they are not alone and that there is support available from CHSF.
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 Reggie has a heart condition called Hypoplastic Left Heart Syndrome (HLHS) which was diagnosed before he was born.
As Reggie approaches his 6th birthday, mum Michelle shares with us her family’s story…
My son Reggie is 5 years old. He was born with half a heart (HLHS).
We were diagnosed during pregnancy, and I was so worried.
The Leeds Congenital Heart Unit were amazing by showing us around Ward L51 (the children’s heart ward) before Reggie was be born so we had an idea of what to expect.
Reggie was born on 1st September 2016 and the care for both Reggie and me was fantastic. Like the help from liaison nurses who often popped in to see how we were. The nurses were like family, and nothing was too much trouble.
As we live in Grimsby, the room we were given at Eckersley House (funded by CHSF) was so homely and just what we really needed after the worry and stress of Reggie’s surgery. Myself and my husband took it in turns to stay with Reggie once he was out of HDU.
There are many faces that I often think about while we’ve stayed on Ward L51. Those faces were my rocks on my difficult days. I just don’t think they realise how important they are – not only to the patients but to the parents and siblings.
The CHSF Katie Bear teddy was given to Reggie both times he’s had open heart surgery, along with a medal and a certificate.
The day Reggie received his Katie Bear for the first time I was so emotional. It was the most precious medal Reggie could ever own. It showed his strength.
We also met so many other families who, like us, were having a long stay and they are still our friends now.
Reggie had a little friend called Emillie that he had his Norwood with, and also found themselves having the Glenn together too. I wonder if they’ll also share their Fontan?
I honestly cannot thank Children’s Heart Surgery Fund enough for their continued support over our journey. And of course, the surgeons, doctors, nurses, domestic staff, play therapists…thank you!
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.
Feedback from heart patients and families tells us your story will help others dealing with a diagnosis of CHD to realise they are not alone and that there is support available from CHSF.
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…
“I still remember the first time I heard of CHSF. The school I worked at was taking part in Wear Red Day. I remember a coworker telling me how her son was born with half a heart and how CHSF supported her through it.”
“I specifically remember her mentioning help with accommodation so she didn’t have to travel back and forth, between Hull and Leeds.”
“Little did I know CHSF would mean so much to me within the years to come…”
Mum Olivia tells us about heart warrior Zelda and her daughter’s journey with Transposition of the Great Arteries (TGA)…It all started at our 20 week scan. We already knew we were having a little girl so we were just excited to see her again. The sonographer was super chatty and full of jokes. So the moment she went quiet I knew something was up. She didn’t say much, just that she could see something wrong with the baby’s heart. She asked us to wait in another room while she gathered some things. I remember thinking to myself… it will be nothing to worry about. Just a murmur or something. People live with things like this all the time.
The sonographer came back into the little office to explain that our daughter had a congenital heart defect called Transposition of the Great Arteries. But that meant nothing to me at the time.
Then she explained that our daughter would have to have open heart surgery within the first two weeks of her life or she wouldn’t survive. And this meant I had to give birth in Leeds.
Zelda was diagnosed with Transposition of the Great Arteries at the 20 week scan
I was so overwhelmed I can’t remember much else from that day. The following day I was sent to Leeds to see the congenital heart disease (CHD) specialist, who confirmed Zelda’s condition and explained everything a little better. So throughout pregnancy we were back and forth from Hull to Leeds, having God-knows how many scans and checks.
On one of those visits to Leeds, I remember a lovely nurse showing us around the different wards, NICU, Ward L51 and PICU. Explaining which ward would support us at each stage of our journey. It was a LOT to take in at the time.
A million thoughts rushed around my head, but when she asked if we had any questions I was lost for words. The hospital was huge, it was so far from home, I didn’t even know where to start!
We expected to be away from home for a least a month (that’s what we were told to expect) so we packed two suitcases. One for us, one for our daughter. We weren’t really sure on where we were staying, we just knew we weren’t leaving our daughters side.
We had a planned C-section as the little rascal was breach, on top of everything else! So we thought we would just figure it out day-by-day once I was discharged.
Zelda needed life-saving surgery soon after she was born
Leeds General Infirmary, 2:07pm, 29th July 2019. The doctor held a baby girl over the little curtain and congratulated me and Joe! I couldn’t help but notice how blue she was! I was so worried.
I told Joe to go with our daughter and not to worry about me. I saw our little baby on a table with a oxygen mask over her face, getting wheeled out. The doctors and nurses were running around and looked so busy. I knew it wasn’t good, I knew it was a race against time.
I was stitched up and back in recovery, without my baby. A doctor came over to me asking to sign a consent form. My hands were shaking that much I could hardly hold the pen, never mind see straight from all the tears.
Joe came to me half an hour later with a photo of my little girl on a ventilator and lots of wires all over her. He told me not to worry, she was okay. And that she had had an arterial septostomy.
Six hours passed before I got to see her. There she was… Zelda. Our heart warrior.
After five nights of Joe sleeping on the floor at my bedside, I was discharged. We were given a key and a piece of paper with directions to get to the Brotherton Wing. It felt like a million mile walk with heavy stitches in the August heat. But I have never been so thankful that we had somewhere to sleep, eat, wash… The best part was it was only 10 minutes away from my daughter’s hospital bed.
On our ninth night in hospital, we met Zelda’s surgeon. She explained that it was time… Zelda’s oxygen levels were in the 60s and still dropping day by day.
She told us that without this operation Zelda would have a very short future.
The next morning, 2am, I couldn’t sleep, knowing ‘today was the day’. So we headed down to Zelda’s ward. We sat by her bed until 12 o’clock.
When we walked her down to theatre, I kissed her hand and said night night. For all I knew that might have been the last time she ever heard my voice. Her little muffled screams through the mask as she went to sleep were truly heart shattering.
That was the longest day ever. We sobbed most of the day. We went back to our room and tried to get some sleep. Later that evening we got the call to say Zelda was out of surgery and all went well!
I remember thinking, if all goes well we could be home in two weeks!
Zelda had her chest closed the day after surgery. She then went on to have a couple of bumpy days, but over all she made a speedy recovery. We got to take our little girl home just five days after surgery (four days after having her chest closed). With the cutest little Katie bear and medal to prove it!
We will always be so thankful for everything surgeon Carin Van Doorn, Children’s Heart Surgery Fund and everyone involved did for us.
I cannot believe we’re coming up to Zelda’s third birthday, a day we were once unsure we would ever see. Thank you for everything! ❤️
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.
Feedback from heart patients and families tells us your story will help others dealing with a diagnosis of CHD to realise they are not alone and that there is support available from CHSF.
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 Ava may have been born with a heart defect but she’s not letting that stop her this summer!
Now 3 years old, Ava will be walking up to 3 miles a day, every day, for the month of August to raise money for CHSF…
Ava’s mum Jess tell us a bit more about Ava’s CHD journey so far…
Ava was born February 2019 with critical Pulmonary Stenosis. We found out about Ava’s condition at my 35-week ultrasound scan. Her heart was abnormally larger than others.
We were referred to Leeds straight away for an in depth scan where they revealed Ava had severe pulmonary stenosis.
Her valves were so narrow they told us to prepare for the worst when she arrived.
She was born two weeks later via caesarean section – alive and doing really well. She went straight off to NICU and had a little procedure done to try open the valves. It worked!
Ava was born at 37 weeks and takenn to straight to the neonatal unit for a surgery on her heart
Ava recovered well and we were allowed home 10 days later. She was doing amazing up until needing open heart surgery to correct the valve temporarily at 11 months old.
If it wasn’t for Children’s Heart Surgery Fund we would have never been able to stay beside Ava during these procedures.
Living an hour away, it would have been such a pain having to drive back and forth every day to see Ava in hospital. We got to stay in the parent accommodation during our stay which we are truly grateful for. This is why donations mean the world to CHSF, like giving a regular donation.
Ava also got her Katie Bear and medal after her surgery which she still sleeps with to this day.
Ava is now on two yearly appointments with the cardiologist and starting full time school in September. She enjoys nursery so much right now and we can’t wait to see how she gets on in the future.
You would never know she had gone through everything she has. Such an active little girl with a big cheeky personality. From what we were told at the beginning to what she is now is just amazing.
Without the Leeds Congenital Heart Unit Ava would not be here today. They are absolute miracle workers.
We try our absolute best to donate to CHSF as and when we can, and take part in fundraisers to keep the donations coming.
We are planning a sponsored walk for Ava to raise some money during the summer holidays. It’s the least we can do after the help we’ve received from the whole team at Leeds!
Ava (3) will be walking every day throughout August to fundraise for CHSF!
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.
Feedback from heart patients and families tells us your story will help others dealing with a diagnosis of CHD to realise they are not alone and that there is support available from CHSF.
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…
Cockburn School in Beeston, Leeds have recently completed some fundraising in memory of classmate Lucas Denham who sadly passed away in December last year.
CHSF’s Lisa and Lauren met Lucas’ mum Alison along with some of the staff and students who took part in raising funds for CHSF…
In memory of Lucas
written by mum, Alison
We are so grateful that Lucas’s high school, which was Cockburn School in Leeds, have fundraised by holding a Non-Uniform Day and have made a donation to Children’s Heart Surgery Fund in Lucas’s memory.
Lucas passed away suddenly on 30th December 2021. He was born with an undetected AVSD and was a cardiac patient from 3 weeks old onwards.
Lucas had three open heart surgeries at the LGI and was operated on by the legend Mr Kevin Watterson. This resulted in him having a mechanical mitral valve.
We were fortunate enough to be gifted an INR machine through CHSF when Lucas was 6 months old which enabled us to test his blood at home.
We have been so grateful for everything the Leeds Congenital Heart Unit has done for Lucas and the support we were given from Children’s Heart Surgery Fund.
Lucas was an amazing young man, everyone that met him or was a part of his life will never forget him – he has touched so many lives in his own special way.
He never complained even though he had to face some tough health and physical challenges throughout his life. Although, when he wasn’t impressed with something you knew it and he wasn’t shy in telling you either!
Lucas didn’t let anything get him down. He always had a smile on his face, and we were all so proud of everything he managed to achieve.
He was loud, had no filter and that was his unique personality. Lucas was the most loving, caring son we could ever have; who we loved unconditionally from the day he was born.
He has left a huge, empty void in all our lives which will never be filled but we are so so proud to have been his parents.
We are so grateful to staff and students of Cockburn School for choosing to raise vital funds for Children’s Hearts Surgery Fund in Lucas’s memory.
Your amazing donation of £200 will go on to help other heart warriors and families, like Lucas. Thank you.
MORE NEWS
Charlie’s little brother, Oliver, was born with a defect in his heart. At school, Charlie was asked to think of something to present at his upcoming Science Fayre.
Charlie wanted to teach his classmates about congenital heart disease as well as raising awareness of CHSF who have supported his family…
We’ll let Charlie tell you a bit more about his project…
“My name is Charlie and I’m 9 years old. My primary school in Halifax recently hosted a science fayre.”
“For the project you could chose to answer a question, solve a problem, or do a research project.”
“I chose to answer the question ‘What is a congenital heart defect?’. I picked this because my little brother, Oliver, was born with a congenital heart defect.”
“During the time my brother was in hospital for open heart surgery, I was able to stay with mum and dad in accommodation just next to the hospital.”
“I even had my birthday while we were staying there and they made it special for me. We were able to stay there thanks to Children’s Heart Surgery Fund.”
Charlie’s brother Oliver was born with a heart condition called Tetralogy of Fallot
“The charity also helped fund some of the machines that helped save my brother’s life. After his surgery, CHSF gave my brother a very special bear called ‘Katie Bear’ along with a certificate and a medal, which my brother loves.”
“So as part of my project I put information about Children’s Heart Surgery Fund on it and QR codes for people to learn more about the charity. I made a pumping heart model and had an interactive t-shirt that uses an app to see how our organs work.”
Mum, Emily said:
“Oliver is now three years old and was diagnosed with Tetralogy of Fallot prenatally. He first had two stent procedures and then he had full open heart surgery at four months old.”
“Oliver has other medical issues, but his heart is clinically stable and now he just receives six-monthly check-ups.”
“We will be forever grateful to the cardiac team at Leeds and Children’s Heart Surgery Fund for the amazing work they do and the support they give.”
We would like to say a huge thank you to Charlie for raising such fantastic awareness of congenital heart disease and promoting the work of our charity. You’re awesome – well done!
P.S. You might recognise baby Oliver. His photo is used on our donate page…
MORE NEWS
We’re proud to present the premiere of our brand new video featuring heart hero Ruby Varley.
Ruby was born with a condition called Tetralogy of Fallot, which means she was born with defects in four parts of her heart. Ruby has undergone three life-saving open heart surgeries at the Leeds Congenital Heart Unit, to date.
We would like to say a huge thank you to Ruby and whole Varley family for bravely sharing their congenital heart journey so far.
Feedback from our heart families tells us that sharing stories helps other patients and families dealing with a diagnosis of CHD to realise they are not alone and that there is support available from CHSF.
Ruby is just one of the thousands of babies, children and adults living with congenital heart disease in our region.
Our charity exists to provide the funding and resources needed to care for a patient’s heart, mind, family and future. By giving a regular donation to CHSF, you enable us to plan for the future while saving lives today.
I can’t commit to making a donation every month, but I would like to donate a one-off amount