Jax's story

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Story: Jax was born in May 2022, the pregnancy was normal and straightforward with no problems. However, 5 minutes after being born it was noticed he had some breathing problems, so he was taken away from us and rushed to neonatal unit. After spending the night in neonatal unit on some oxygen Jax was returned to us and we spent a week on transitional care. He was on a feeding tube as he really wasn’t taking-to his bottle but we were told it was because he had a stressful first 24 hours and would come around. 

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Diagnosis: Anorectal Malformation (Late/missed diagnosis).

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When Diagnosed: July 2022 (8 weeks old).

Treatment and Outcome: Due to late diagnosis, Jax’s treatment plan wasn’t as simple as we were originally told (a quick operation to open-up his anus).

 

Support in our community: We met-up with Nige and Ceri and, with the generosity of our own community, have collected and delivered toiletries to help the charity to help other families in our position.

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Jade goes on to tell Jax’s story in her own words

We had some concerns about his bum as it didn't look normal, and he was constantly crying when trying to poo, but we were told it was fine and would be colic. 

Skipping forward to his 6 - 8 week check-up at the doctors it was realised the Jax had been born with an Anorectal Malformation. For 6 - 8 weeks his bowels had been filling up to the point of them nearly perforating due to him not being able to poo properly.

 

Jax was transferred straight to Leeds Children’s Hospital from Bradford Royal Infirmary and due to the diagnosis, he had to have tests on all his organs and spine as his condition can sometimes cause other issues due to the way they develop in the womb during pregnancy. Luckily all the tests came back clear and the surgeons came up with a plan on how to fix him.

Jax was rushed in for urgent surgery and had a colostomy bag fitted to enable him to naturally empty his bowels. When he had this surgery at 8 weeks old his mother caught Covid meaning his dad had to stay in and care for him for 7 days without being able to go home for essential items or a normal meal. Luckily, The Millie Wright Children’s Charity was on hand to help out and provided food, snacks and hygiene products.
February 2023 

We returned with Jax to Ward 42 for the second of three surgeries to fix his bowel and reposition his anus. This surgery was the most major as this operation lasted nearly 8 hours. Once again while our main focus was looking after and nursing our little boy, The Millie Wright Children’s Charity was there to provide us with a Saturday night supper and other food and snacks. This made things a lot easier, especially so we didn’t have to leave the ward and leave Jax alone.

At this present time, we are still waiting for a date for Jax's final surgery but fingers crossed it will be soon and we know that the charity will be there to take a huge weight of our shoulders by doing what they do.