Heart Dads poem written to his daughter 10 years post Heart transplant

Left at the door

Who would have thought it’s been 10 years,Since we left you by that door.

You were so small,so vulnerable. It was what we’d waited for.

The prior 6 months they’d saved your life,too many times to count.

 

But still your body kept battling on,you’d been through a huge amount.

And yet you flourished,laughing and playing,shining all the time.

Sometimes we forgothow ill you were.Our girl was surely fine?

We wondered if you’d really need the thing we tried forgetting.

Perhaps you’d still not need all this,Perhaps you’d just get better.

And then the shock when the call came in. It was time, they said, tonight.

 

We weren’t prepared, you had no idea. We held onto you so tight.

The room was set, the time was now, We longed to hold you more.

We knew you were safe, but still it was hard To leave you at the door.

And so we walked, we sat, we cried, we wondered when they’d ring.

It took so long, Was is it all ok?And we should go back in?

But then they called with such great news It all had gone to plan.

We wiped our tears, made room for more, and back to you we ran.

 

This was the start of your new life. Such courage you had shown.

Before we knew it, the time had come for us to take you home.

Of course, we knew, for this to happen, the sacrifices made.

The sadness others must be feeling, the selflessness displayed.

Our thoughts and prayers don’t feel enough, but that’s all we can do.

Our precious, funny 10 year old is here because of you.

Parent’s share their children’s heart journeys to go into book

Thank you to everyone who’d like to have their heart journey put into our book.

We have decided to create three books. Birth-5 years, 5-10 years and 10 years to early adult hood. Please see the form attached. Ideally we’d like everyone’s completed story templates (below) emailed to the relevant person by June 30th please. All information is on the template. We will give a few reminders as the month goes by ❤️ any queries please do get in touch. Kelly, Sally and Nicola.

Book Form updated

Life story told by Adult living with CHD

 I’m more than happy to share my story with you, I love telling it because it makes me realise how far I’ve come and reminds me to be grateful for every day.
 
I was born in May 1987 and was my parents second daughter. I was a big baby at 9lb 2oz and seemingly healthy. At my three month check the doctor detected what they initially thought was just a heart murmur but decided to send me up to Exeter for more tests to double check. They soon realised that it was much more than just a heart murmur. They discovered that I had a large VSD (Ventricular Septal Defect), my Pulmonary Artery was severely malformed, I had a PDA (Patent Ductus Arteriosus) and collateral arteries to my lungs. Back then the only way to fix me was a heart and lung transplant but the consultant explained that due to the nature of my arteries the surgery would’ve almost impossible. My parents were told that I wouldn’t see my first birthday. They were devastated to say the least. As the weeks and months passed I remained healthy and soon the months turned into years. I had a good childhood which I felt was as normal as could be. I enjoyed ballet although as I got older I did start to become worn out with physical activities. I had yearly check ups with my consultant, Dr Rob Martin (you may well know him or know of him) who was absolutely amazing and so reassuring for my parents.
 
Miraculously I was extremely well until I got to the age of nine when I started to notice I was getting more breathless and my lips were going more blue. My haemoglobin had started to drop and so this was when Dr Martin decided it was time to intervene. In the nine years since I was born medical technology had come on leaps and bounds and instead of considering a transplant, they were able to plan a series of operations to fix what I had. I had my first operation in the summer of 1998 at Bristol Children’s Hospital. This was a ‘shunt’ operation, designed to connect arteries to improve blood flow to other arteries allowing them to grow. It was a great success and the whole team were amazing.
 
From my surgeon, Mr Pawade, to every single nurse that cared for me. Thanks to them I don’t have any bad memories or feel any trauma attached to this time. I actually really enjoyed being in hospital once I’d started to feel better and even remember having water fights with syringes with the nurses in the garden! I had my second ‘shunt’ operation the following summer. As before this was also a great success and I noticed immediate improvement. My third surgery was planned for the following summer. This was to involve open heart surgery where they would close the whole and do some ‘tweaking’ as my consultant put it. It was meant to be my final surgery but when Mr Pawade opened my chest up, he was shocked to see that my blood vessels were completely different to what they had seen through scans. He therefore had to rethink the whole operation then and there while I was on the table. This operation was nine hours long and unfortunately he wasn’t able to do everything he wanted to and could not close the hole. He broke the news to my parents that I would require further surgery to finish what he couldn’t do and eventually close the hole.  This was carried out the following summer and was a success. Throughout my time in hospital, although I remember traumatic moments, my overall feeling is that of happy memories! I only ever remember feeling anxious before my fourth operation, most probably as I was that much older and much more aware of consequences. In amongst having all this surgery, I had also had three blood clots, one in my lung, one in my heart and one in my brain and was subsequently put on warfarin.
 
Since the age of 14 I have been well and have lived a relatively normal life. Other than a TIA (Transient Ischemic Attack) caused my a small clot in my brain back in 2014 and a keyhole stent fitting in 2018 I have managed to avoid any major surgery. I have regular checks up as I have a very leaky pulmonary valve which will be replaced via keyhole next year, and regular blood tests to keep an eye on my INR. Other than that I am perfectly healthy!
 
So that’s the story of my heart from when I was born but there is also another part to my story which I think you’ll find extremely heart warming –
During one of my check ups with my consultant when I was around 27, I was asked if I’d thought about having babies. My husband was with me at the time and we both said of course we’d like them but not just yet and asked why he had asked us. He broke the news that my heart defect, although corrected, could seriously affect my chances of carrying a baby. This was a huge blow as I’d never even given this a thought and it was never pointed out to me before. He told us that there was a specialist team of doctors in Bristol that could tell us more and to go see them before we even think about trying to conceive.
 
Even though we weren’t planning on starting a family just yet, we decided to see these doctors anyway just to get a clearer picture and to hopefully give us time to get our heads around whatever they told us. First we met with a cardiologist who explained everything from my hearts point of view. It was scary listening, three months in hospital, possibility of heart surgery during pregnancy and so on. My husband decided then and there he didn’t want us to risk it. I was still holding onto hope though and was prepared to go through a lengthy hospital admission if needs be. I remember coming home and sitting down with my husband, my parents and my two sisters to let them know what the doctor had said. After listening to e explain, my older sister Ebony took me to one side and said ‘If you can’t have a baby, you know I’d do it for you’. Although this was an AMAZING offer, I almost dismissed it as I was determined my heart was strong enough to do it myself.
 
We then had an appointment with an obstetrician who explained everything from baby’s point of view. She said the medication I would need for my heart to survive would 100% affect the baby and could even give the baby a heart condition. This was the deciding factor for me. It was one thing if I became ill but to knowingly harm my baby, I just couldn’t do it. Realising this, I spoke to my sister and asked her if she was serious about her offer and to my amazement she absolutely was. She already had two children of her own and knew that having a baby of our own would complete our little family. We started our surrogacy IVF in 2016 but our first round turned out to be unsuccessful. The doctors realised I naturally didn’t produce many eggs and therefore we only managed to get three viable embryos. Two resulted in really early miscarriages and one just didn’t work at all. We were all devastated as you can imagine. We couldn’t afford a second round as this time we wouldn’t have any NHS help. This time it was my younger sister, Ellsie, who came to the rescue and set up a fundraising page. We had decided to swallow our pride and asked for help from friends and family which they were all more than happy to do. As well as the fundraising page we’d also set up some small events. With the money raised plus a small loan from the bank we had enough to go for a second round! Unfortunately this round only produced one viable embryo. We were gutted as we knew we couldn’t go again if that one didn’t work but as my sister said ‘It only takes one!’. She was absolutely right and in November 2017 we had a positive pregnancy test and baby was growing perfectly!
 
Our beautiful little girl, Rae Ebony Ann, was born on 24th July 2018. We were all absolutely over the moon and to top it off Rae’s heart was perfectly healthy. She is now nearly two and I am forever grateful to my amazing sister for her.
So that’s my story, sorry it’s a bit long but there’s quite a lot to get in there! Thank you for showing an interest, I’ve really enjoyed typing this up ❤

Our youngest Heart Hero-Alby

Alby’s Mum said ‘We were booked in for a c section on the 30th April (due 11th May) but baby Alby had other plans and decided he wanted to make his appearance extra early! My waters broke Wednesday night after feeling a little strange for a few days and he arrived Thursday 16th April at 3pm via c section. 
 
His nurses, doctors and consultants say he’s doing amazingly well, and he looks so healthy considering. Very emotional couple of days to say the least. They say he’s classed as having only half a heart but he’s definitely got the whole of all of ours!’

Heart families offered to camp at home

In June we were due to host a weekend full of activities, relaxation and fun at The Wilderness Centre with 55 heart families. Sadly this has now been postponed to 2021.

As a slight replacement along side the https://facebook.com/events/s/glasthomebury-festival-2020/243621583489596/?ti=icl we have offered courtesy of JB Event Hire bell tents so our families can camp at home in their gardens.

One parent said ’It’s so weird cause today it really hit me that we may not get a holiday for so long.  Yesterday we were meant to start a short caravan break but obviously had to cancel.  We were also considering going to Paris Disney for my big birthday in June and obviously that’s not gonna happen either. Really needed this today – thank you so much’ 

Heart family support

Noah and Jasmine’s story…

After 2 rounds of IVF/ICSI, the day our ‘longed for’ twins were to be born arrived. We are still in shock what happened soon after. On day 4, Noah became unwell with a suspected heart defect. He was transferred to St Michael’s neonatal unit in Bristol from Gloucester that evening and an echocardiogram confirmed that he had a Coarctation of the Aorta and a large VSD. Surgery was the only way forward to save his life. We were devastated. Jasmine was left behind in Gloucester until they could transfer her to be in St Michael’s also. At 3lb 13oz and tube fed, she was unable to be discharged from hospital to our care.

A day after Noah was admitted to St Michael’s neo-natal unit, Jasmine was transferred assuming she was fine –just a tired baby who wasn’t feeding due to her small size. However, on the morning of Boxing Day 2011, whilst having a cuddle with Mummy, she presented with a gasping sound and after Daddy held her to see what was happening Jasmine quickly deteriorated. In 30 seconds our world was turned upside down (again). A huge team of medics rushed in and we were ushered to a small room where we waited for hours. A different Cardiologist came to talk to us.

He told us that in all his 20 years, neither he or his colleagues had ever seen the combination of heart defects she presented with. She had Tricuspid Atresia, Hypoplastic Right Heart Syndrome, Truncus Arteriosus and bicuspid truncal valve. Jasmine has half a working heart. They couldn’t ever ‘fix’ her but instead treat her with palliative surgical options – but at that point, surgeons had no idea how or if they were going to proceed.

Flash forward to 28th December 2011 and whilst there was no clear consensus of what they were going to with our daughter, the surgeons had a plan for Son. He underwent a thoracotomy (through the side of his chest) to ‘correct’ his Coarctation of the Aorta. After battling a serious complication of the surgery – a chylothorax with chest drains and special diet, 6 weeks later, with a rapidly deteriorating heart, he underwent open heart surgery to patch the large VSD. The change in Noah after this surgery was nothing short of miraculous – he instantly gulped down a bottle of milk, something he had never managed before and literally thrived from that moment on with just a few medicines, he was finally discharged at 10 weeks old.

Jasmine, of course, was a much trickier case to contend with. She was tiny –and running out of time for intervention. They decided the Sano Shunt (a small shunt between the right ventricle and the pulmonary artery) was the way to go. We will never forget the haunting words of her amazing surgeon – ‘it is very risky. But if I don’t try this, she will die’. She spent over 7 hours in surgery, over 2 hours on heart bypass, 3 blood transfusions and her chest left open due fluid build-up. She returned to PICU and, terrifyingly, we almost lost her on a few occasions due to sepsis and other complications.

After 2 months in Bristol, they were both discharged home. We finally felt a little like a family. However, within a week, Jasmine became very ill once again and for the next 5 months underwent substantial treatment in Bristol Children’s hospital – a prolonged stay in PICU, a BT Shunt thoracotomy operation, Glenn Shunt open heart surgery to name a few and many weeks on the cardiac ward. During this time, we were lucky to stay at the Ronald Macdonald House. Hospital became our home and we somehow managed to get through it. Finally, we made it home in late July 2012 along with copious amounts of medicines, feeding tubes and a strict regime.

7 years on from the start or our heart journey, there have been a plethora of issues and diagnosis for Jasmine – a Gastrostomy placement as she is fully reliant on tube feeding, Fontan Open heart surgery, a dozen or more admissions for acute illness, unsafe swallow, immunoglobulin deficiency and more operations on the horizon in the future to repair further defects. Jasmine is helped greatly at mainstream school by having full time one-to-one support and despite everything, is a happy little girl. Life certainly isn’t always easy or conventional in the Heath household but we grab each and every opportunity to enrich Noah and Jasmine’s life the best we can.  A HUGE THANK YOU TO Noah and Jasmine’s parent’s for sharing their journey.

Maggie’s story…

My four-year-old daughter was diagnosed with Tetralogy of Fallot when she was ten days old and required open heart surgery when she was six months old to correct some defects in her heart. She was a poorly baby and was tube fed for eight months of her life. She has since been diagnosed with autism. 

I recently attended a pottery event organised by Heart Heroes. It was great to be able to meet other families of children with heart conditions and share stories and feelings with people who have been through the same as you. To be able to share frustrations and fears, as well as have fun and make new friends is very much needed. Heart Heroes creates wonderful opportunities for many families for which we are very grateful.

It can feel very lonely and isolating having a child who is poorly or who has developmental issues, so to meet families who ‘just get it’ is very comforting and helps you remember you are not on your own.

Support means everything…

‘As a parent I would love it if people would support heart Heroes because its brings joy to the children who are struggling with a lifetime condition. As a mother to a cardiac child having gone through all the ups and downs and seeing the stages that we’ve seen with our child… To have a charity that supports each child to bring back that joy and happiness in just the littlest of ways makes us as parents happy. Having different events organised for the children makes them smile and gives them a time of happiness and to forget their illness’