Skip to content

Louie’s story

March 30, 2023

Despite arriving prematurely and needing immediate surgery, Louie, a happy and playful baby, had been discharged from hospital and was reaching the usual milestones, until he caught what seemed to be a common cold in the summer of 2021.

“Louie was born on 18 December 2020, two months premature. We’d had a perfect pregnancy, so it was a bit of a shock. Within an hour of his birth, he was diagnosed with a tracheoesophageal fistula (TOF), a rare condition where the upper part of the oesophagus doesn’t connect with the lower oesophagus and stomach,” explains mum, Annie.

Louie had to have surgery immediately and was in the neonatal intensive care unit (NICU) for two and a half months. During this time, he was diagnosed with a very rare, non-life-threatening chromosome deletion condition called 10q26. Every person with a 10q26 deletion is unique and the affects have been shown to vary considerably, so it is difficult to predict how this may have impacted Louie.

“Louie had been home for five months and was a happy, smiley, playful baby, progressing well and meeting his milestones, when one day in July he was a bit sniffly and had a cough. Mindful that children who’ve had TOF can be more vulnerable, we took him straight to the GP. While they didn’t see anything of immediate concern, that afternoon his cough worsened and we made the decision to get him checked out at hospital. They said he had suspected respiratory syncytial virus (RSV) and bronchiolitis, both can be very serious respiratory infections for a vulnerable baby.

“By the next morning he had deteriorated, and we were transferred to St George’s ICU, where he was immediately put on a ventilator. But they were struggling to keep his oxygen levels up, so he was taken to Great Ormond Street and consequently put on extracorporeal membrane oxygenation (ECMO), a heart and lung by-pass machine – a machine I wish we had never needed to know about. It was all so overwhelming. We had hardly any time to decide if we wanted him to be put on ECMO, a machine that would put a huge strain on such a little body, but we were told he would go into cardiac arrest without it. We had to do anything that’d help him stay alive.”

A later CT scan would reveal devastating news no parents would wish to hear. The ECMO had caused Louie to have a severe stroke, so severe, he had irreversible brain damage. “All we could do was hope that he could miraculously be healed. It broke my heart because his brain was always perfect.”

An agonising week passed talking to various medical teams, but the damage was too much and the machine keeping Louie alive was turned off on Thursday 15 July 2021. “It had all happened so quickly; he’d gone through so much and was such a little fighter. That’s when we were introduced to Vikki, a Family Support Worker at Shooting Star Children’s Hospices. Vikki would regularly call to check in, and even if I didn’t or couldn’t answer, she’d leave a message.

“I think when your child passes away you don’t necessarily want to talk to anyone immediately and you’re not always the one who’ll be reaching out, so having that regular check in is so needed.

“And then I fell pregnant again. My partner, James and I feel that Louie chose his brother, Luca, whose name means ‘bringer of light’ and he really is.

“When Luca was a few months old, James and I felt it would be good to have some dedicated time to talk about how we felt and try to process it all, so Vikki referred us for couples counselling at Shooting Star House. What we went through was incredibly traumatic and so to have an hour set aside to talk is really important. Understandably we don’t talk about it on a day-to-day basis, we focus on the good times, so it’s nice to have that time to actually hear a bit more about how each other is feeling.

“It’s been amazing to have had that support provided, and to be able to use the incredible services Shooting Star Children’s Hospices offer. I’ve recently signed up for the bereaved mums’ pamper day and am keen to get my mum to attend one of the grandparents’ days too. We also feel the hospice will be a great support when we tell Luca all about his brother.

“It really is the unimaginable, the unthinkable, losing a child. We’re very lucky to have a strong support system as well as the support from Shooting Star Children’s Hospices – without these I think it would all be so much harder. I feel we could have been easily forgotten by the system, but Vikki kept checking in and for that we’re so grateful.”

Shine Summer 2023

This article is from the virtual edition of Shine – our supporter magazine. Check out the other articles in the latest edition.
Read Shine