“HAPPY HEART MONTH HEART WARRIORS!
“This month we stand united with our heart community. We share our stories in hope that someone going through the same gets some kind of reassurance they’re not alone.
“This month we remember the highs and lows of being a heart parent.
“This month we remember those precious heart warriors that never made it home.
“This month we thank our doctors, nurses, and surgeons who have made our warrior’s lives possible.
“Elijah is my heart warrior – how far he’s come from being born to now!”
— heart mum, Emma
“At 20 weeks, you’re told your unborn baby has an abnormal heart and only one lung.
“Two days later you’re given a diagnosis of pulmonary atresia with a ventricular septal defect (VSD), right aortic arch and Major aortopulmonary collateral arteries (MAPCAs). Also then finding out another two days later, your baby has a chromosome disorder, 22q11 deletion.
“Your whole world turning upside down in the space of a week!
“Meeting new doctors, surgeons, specialist nurses, support workers and most importantly a new family…
“Elijah’s first intervention was a cath lab in April 2022, by the amazing Dr Bentham. This is where we were told that without heart surgery, Elijah would only make it to age 13.
“Fast forward to June 2022 where Elijah becomes part of the ‘zipper club’. He goes in for his first 6-hour heart operation to help grow his pulmonary arteries, by the amazing surgeon Dr Osama Jaber. This operation was successful in Elijah’s case (it sometimes isn’t) and he was allowed to come home and grow.
“Finally, after a year, Elijah was a candidate for his repair. So, in July 2023, he first went to cath lab for his MAPCAs occluding.
“A day later he underwent a 10 and a half hour operation to repair his heart by the amazing Ms Carin van Doorn. This would hopefully prolong his life to adulthood!
“Although we had four plans, most things went to plan – with a few hiccups along the way. Now we wait for another cath lab to see how Elijah’s heart is handling completely new blood flow, the pressures inside the heart and how his left lung is doing.
“The wait is agonising, as so many other things are going on, but here Elijah is, even with a half-repaired heart – he’s fighting strong!
“Celebrate every tiny milestone with us… The bloods that didn’t clot. The X-rays that came back good. The ECG that’s normal for our warriors. Getting to 92% oxygen on their own! Having open heart surgery, then getting up and walking a few days later!…”
“Today I sit in complete awe of him. What he’s overcome. How on earth he’s managed to keep fighting through everything that’s been thrown at him and he’s only two years old!
“I have so much admiration for all our heart warriors and the parents who have to keep that smile going, even in the hardest times. We love you all so much for your support, strength and help you’ve given us these past two years!
“Our heart warriors are relentless, resilient, fighters and so so loved!
“Celebrate every tiny milestone with us… The bloods that didn’t clot. The X-rays that came back good. The ECG that’s normal for our warriors. Getting to 92% oxygen on their own! Having open heart surgery, then getting up and walking a few days later! Getting pacing wires removed with no issues (unless you’re Elijah!) Constant echo’s to say everything looks good! (Or sometimes not…) These are our lives and we celebrate together…
“We mourn the children who grew their wings far too soon. We lean on each other for those words of support.
“Live for the moments, live for today…because tomorrow is never promised!
“Also, please, if you can donate to Children’s Heart Surgery Fund. These amazing people are so invaluable to us parents. Helping us in our time of need with accommodation at the hospital, grants, food vouchers, emergency packs, toiletries, amazing support and family fun events.
“But most importantly for us Katie Bear teddies for our open heart surgery warriors, a medal and a certificate!
“Elijah I love you so much son. You keep proving people wrong. You keep going with the fight. We’re right by your side little warrior!”
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 Elijah 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.
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