Little Zachary has a lot to look forward to. He's soon to become a big brother and a five-piece suit has been picked out for him - complete with engraved cufflinks - to be a pageboy at his parents' wedding later this year. But Zachary is still awaiting surgery for a rare heart condition that threatens his life.
Nine-month-old Zachary was born with tetralogy of Fallot (TOF), a rare heart condition that is a combination of several defects. Babies with TOF have a higher risk of getting an infection of the layers of the heart and a higher risk of having irregular heart rhythms, or arrhythmia.
Natasha Browning, Zachary's mum, had never heard of the condition before doctors confirmed he had the complex condition when she was 22 weeks pregnant. After he was born, he was immediately put into intensive care and his parents say they were not able to be discharged without knowing basic life support.
Read more: Five-month-old baby needs life-saving surgery for rare heart condition
Zachary lives with a hole in his heart and requires medication to keep the blood pumping around his body as one of his arteries is thicker. The condition can cause low levels of oxygenation which leads to him appearing grey, lifeless, floppy, and blue. When this happens, Natasha and Harrison need to act quickly to put him into the recovery position.
The proud parents, both from Cardiff, say that they have been told Zach won't make it to his first birthday unless he undergoes life-saving surgery. The procedure, which would see Zach undergo a four-hour surgery with a fortnight's recovery in hospital, would allow Zachary to have a sense of normality as he grows up.
But, while he was scheduled to go in for the operation in Bristol twice last year, Zachary's ill health has meant things have had to be put on hold. After being unable to go in for surgery due to being hospitalised with rhinovirus first and then coronavirus just a week later, Zachary began to have seizures and has been diagnosed with epilepsy.
A CT scan revealed that Zachary has a mild form of epilepsy. However, the scan also found mild enlargement of the frontal horn of the lateral ventricles and a Cavum septum pellucidum. This means Zachary can have seizures due to his epilepsy and his heart condition.
"He's been diagnosed with absent seizures, so he'll stare at you and look straight through you. He also suffers with chronic cluster seizures, which is almost like a jerking movement," Natasha said. Zachary has been hospitalised due to these seizures and Natasha says that she and Harrison are preparing themselves for him to have more in the future.
Since January, Zachary has been on sodium valproate full-time and the family is now waiting for the results of an MRI scan that will determine whether his newly diagnosed conditions will delay or hinder his life-changing surgery. He also takes propranolol to treat his TOF on a daily basis.
"It's really difficult and complex," Tasha said of the amount of medication Zachary has to take. "He has to have his sodium valproate at 6am and 6pm and he's gone back to his usual routine of heart medicine at 9am, 5pm, and 1am."
Having to take so much medicine at set times has been difficult for both Zachary and his parents. "It's been very stressful for myself and Harrison. We've just come out of hospital with Zachary having HMPV and bronchitis, so he stopped eating," Tasha said, adding that after they'd arrived home Zachary had another seizure and had to go back into hospital.
"He was on oxygen for six nights in a row. It was really hard. Harrison and I were torn apart ourselves because he has work, I was with Zachary. He would come up to the hospital to visit for a little while but would have to go home to sleep because he had work in the morning," Tasha said.
"When I went to the hospital and saw him being on oxygen, for any parent to see their child at any age on oxygen, it tore me apart," Harrison said. He says that his employers have been supportive, which he is thankful for, and that they're considering raising money for awareness of TOF and epilepsy.
Harrison has purchased merchandise and sponsorship forms for a fundraiser at the end of March. "I'm not doing it for myself, I'm primarily doing it for my little boy," says Harrison, who was also diagnosed with epilepsy. "For me, it will mean more for me to do it for little Zachary." Harrison says the thought of fundraising for his son "gives him the strength to do more".
"For us as a couple, we've been through a hell of a lot in the years we've been together" Natasha said. "It's been a tough road, and it's going to get tougher. If Zachary can't have surgery, we know what will happen - he will pass away. If he can have the surgery, it will be excellent because we can get our little boy fighting fit and hopefully kicking a football about by the end of the year."
Natasha is six months pregnant with a baby girl and is looking forward to seeing Zachary becoming a big brother. She and Harrison are in the process of planning their wedding in May and are hoping Zachary will be a pageboy. "We've got Zachary a five piece suit for him," Natasha said.
Due to Zachary's rare diagnosis with TOF, Natasha says checks have been done while she is pregnant to see whether her daughter would be born with the same condition as her older brother. Thankfully, she says, the checks have come back clear. But, there is still a chance she could be diagnosed with epilepsy, something which Harrison and Natasha accept is out of their control.
"To be told by a surgeon that if your son doesn't have surgery there's a high chance that he won't survive at all - and that was without his epilepsy and everything else..." Harrison added. "The week we've decided [for our wedding] is a week before little man's birthday."
However, with Zachary still waiting to undergo the surgery that would save his life, his parents say the wedding could be put on hold if he's scheduled to go in for the operation around the date they've set. "Something we've told everybody invited to the wedding is that, should Zachary's surgery be called before the wedding day, then the wedding is off - just temporarily until the little man gets sorted."
For Zachary to reach his first birthday would be a huge milestone, and his parents are already planning a party to celebrate. "There'll be a little party with the family, we'll get out the decorations - banners and balloons, and everything else." Natasha said. It will be an emotional occasion for Zachary's parents.
"We're lucky to get this far but we know that his first birthday might not happen. There's a good chance that he might not be here much longer if he doesn't have the surgery."
Following a scan, there have been some minor improvements with Zachary's TOF and the medication is helping. However, Natasha says the medication Zachary takes can only help him for so long and he needs surgery in order to live a normal life. His additional diagnosis of epilepsy complicates matters further.
"If he's to have a seizure, what strain is that putting on his heart?" Harrison said. Natasha added that it can be difficult to know which condition is causing Zachary to have a seizure - whether it's related to TOF or an epileptic seizure.
"Epilepsy can effectively be triggered by anything. For adults, like myself, it could be lack of sleep, alcohol, stress - it can be anything really," Harrison said. "For children, from what we were told it's more in regards to sleep deprivation so, if he's got a virus, then he's not going to have a lot of sleep and that could potentially be a trigger."
The nature of Zachary's heart condition means that his parents have to take numerous precautions. They say even crying could put him at risk and that the only time that they’ve heard him cry was the moment he was born. Sometimes babies who have TOF will suddenly develop blue skin, nails, and lips after crying, feeding, or when they are agitated, caused by a rapid drop in the amount of oxygen in the blood.
Natasha and Harrison say they are thankful to staff at the NHS, from nurses to paramedics, from those working on the ICU to those on the HDU. "The paramedics are so responsive and absolutely phenomenal. I know they've been striking recently, and I said, 'If I could stand here and join in with you, God knows I would.' I've realised that our son now relies on the paramedics almost every day of the week," Natasha said.
"It's an enormous amount of support we get from all angles," Harrison said, reflecting on the support of not just NHS workers, but also that of his family and employers. "With the amount of support we've been given, I think, if we didn't have as much, we wouldn't be able to keep on going."
Wanting to give something back to the various organisations who have supported the family, the couple intend to have collection pots at their wedding for charities such as Noah's Ark and the Welsh Air Ambulance. The NHS will also be mentioned in a speech at the wedding to thank workers for their support.
"I know if Zachary can't have the surgery because of his head, that's a completely different matter. You can't operate on a child if there's something that could prevent it," she added. "We've tried to learn to accept the fact that this could be it now. Every day that we make a memory with Zach is important and hopefully he can help walk his mummy down the aisle now."
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