On their 20-week scan at their local hospital in Rotherham, Jaxon’s family were told there was a problem with his heart. They found out he had HLHS (Hypoplastic Left Heart Syndrome) and had 3 options:
1. Terminate the pregnancy
2. Go down the surgery route
3. Comfort care (have him full term and let him pass away with no input)
They chose the surgery route, and Jaxon was born at 38 weeks and 5 days at 7lb 2oz.
At 2 days old he started to struggle and surgery was needed. The Norwood Procedure, which should have been his stage one operation, would have been too high risk, so Jaxon had a hybrid procedure to bide him time.
But a couple of days later he began struggling again, so he was taken down for his second open heart surgery to tighten the bands on his pulmonary artery. Jaxon’s mum Jade Louise Heard picks up the story:
At home, 3 weeks later we noticed his scar looked weepy, so we took him back to Leeds where he was put on intravenous antibiotics.
Jaxon became clammy and he wasn’t gaining weight, so an NG tube was repassed.Similar to a lot of heart babies, Jaxon suffered severe reflux, and he had really bad episodes where the emergency buzzer had to be pressed for help as he went grey and floppy.
In June 2016, he had an echo on the ward which showed he needed an emergency Cath lab procedure due to his PDA (Patent Ductus Arteriosus) closing – it needed to remain open for him to survive.
A few hours later we had a phone call – he’d gone into cardiac arrest and needed PICU ventilation. If we had been home that day we would have lost him.
Fast forward to his surgery in August 2016. He went down at 8.30am, and eventually at 10pm we had the call. It wasn’t good. Jaxon was critical – he was stuck in bypass and the only option was to put him on ECMO (heart-lung bypass machine).
I’ll never forget seeing him – so swollen and so many machines surrounding him. I had to be sat down, the room was spinning and alarms bleeping. I was informed his kidneys were failing and he needed dialysis. I went back to accommodation whilst they were still trying to stabilise him.
At 7am, my phone rang again. We needed to go up quickly as he was losing too much blood. He was even more swollen than before and looked so fragile. We were told his chances of pulling through weren’t good so to prepare ourselves, even though the bleed was slowing.
Days passed, and despite tiny improvements, we noticed his little toes going purple on his left foot. Something wasn’t right, he wasn’t receiving enough blood to his lower limbs. They thought he was going to end up losing his foot. By now one of his fingers started doing the same.
On August 14, his daddy’s birthday, the nurses made a card with his hand and footprints as a surprise for him. We decided on this day to get Jaxon blessed as he still wasn’t good.
On August 18, he needed to come off ECMO as he’d caught an infection, and we were told to come and say goodbye to him. However, a specialist came and removed clots on his lungs and his numbers started to improve, could there be hope?
He was finally off ECMO and his kidney was slowly kicking back in. Jaxon seemed to slowly improve. Soon after we noticed his head started to swell. Concerns grew and we begin to panic again. There was a blockage in his neck so he was put on blood thinners.
A couple of weeks passed and Jaxon started to make movements and take breaths on his own. He’d done it! He’d beat this. He was soon off the ventilator and breathing for himself.
The day came. Jaxon was going back to HDU – a day we thought would never see.
Day by day he got stronger, but there was a problem – he still couldn’t tolerate milk. So a decision was made to place a PEG-J feeding tube into his tummy for feeds and home was mentioned!
We were trained in the PEG-J, medicines, CPR and injections to thin his blood, and after 7 months in total stay we were allowed home!
Jaxon managed nearly a year at home before he needed a bigger shunt placed late in 2017. The next stage of surgery will be discussed in a meeting this year (2018).
He’s now 21 months old. A bit small for his age, and a little behind in milestones.
But he is the happiest, cheekiest little boy and we are so grateful to everyone at Leeds for all the effort they put into giving Jaxon life.
We’re always grateful to hear your stories, primarily to show the importance of the incredible fundraising which enables our charity to thrive.
Your stories also help to raise awareness of CHD and provide comfort to other families. Thank you.