Three minutes after she was born via elective C-section, Elodie-Rose was rushed to intensive care
Baby Elodie-Rose has been given a prognosis of just six months (cc: submitted)(Image: Submitted)
What should have been one of the happiest moments of one family’s life became a total nightmare within just three minutes.
Elodie Rose was born to Danielle Leadbitter and Brendan Robinson at City Hospital on July 10, weighing six pounds and two ounces.
But three minutes after she was born via elective C-section, Elodie-Rose was rushed to intensive care as she was not breathing and had become very floppy.
Danielle, from New Basford, said: “They brought her where I could see her, and I just looked at her and I could tell something was not right.
“The moment that they cut the cord, it was like a nightmare.
“Everything kind of plummeted within three minutes.”
Elodie was not breathing, crying or moving – she was taken to the neonatal intensive care unit where she was placed on breathing support machines.
Elodie was quickly transferred to Queen’s Medical Centre and after extensive tests and scans, including genetic testing, doctors told Brendan and Danielle that Elodie had SMA-type 1 – the same condition that former Little Mix star Jessy Nelson’s twins have been diagnosed with.
However, following more tests, doctors found out that Elodie had a rarer form of the disease called SMA-type 0.
SMA-type 0 is the rarest and most severe form of spinal muscular atrophy, and causes profound muscle weakness and a life-limiting prognosis.
The disease is caused by a genetic defect in the SMN1 gene combined with a very low number of backup SMN2 gene copies.
For Elodie, this diagnosis means a prognosis of just six months, with doctors telling the family that she may never be able to sit up on her own..
Elodie-Rose and Danielle in the moments after her birth (cc:submitted)(Image: Submitted)
Danielle, 31, added: “Being told that as a parent, and being told she might not be able to even sit on her own or make six months was gut-wrenching.
“It was horrible. My whole life has turned upside down.
“I feel like when I gave birth, I’d already lost her anyway because of how traumatic that was.”
Elodie-Rose is still in the NICU and is on medication, which makes her comfortable, but currently there is no treatment that will cure her condition.
“We are taking every day as it comes, celebrating every small victory and cherishing every second we have with our little girl,” Danielle continued.
Gene therapy is an option for Elodie-Rose, and it would help ease her symptoms and prolong her life, but in order to undergo the treatment her condition would need to improve significantly.
Danielle said: “I feel like I’m living in a nightmare and I’ll wake up at some point and then I’ll just be able to be normal Danielle and have my baby little girl.
“But I’m not. I’m just in a bit of a haze and just kind of living each day as it comes.”
Danielle and her two other children, Carter (6) and Jaylen (3), have faced a lot together – including becoming homeless in 2023.
The family are currently living in temporary housing in New Basford, with the boys attending school in Clifton.
This means that even if Elodie-Rose becomes stable enough to bring home, she would not be able to while the family are still in temporary housing.
Danielle, Brendan, Carter and Jaylen (cc:submitted)(Image: Submitted)
The team at Queen’s Medical Centre, where Elodie-Rose is being treated, are currently helping the family find more permanent housing in Clifton – so if Elodie-Rose improves she, and all the equipment needed for her care, would be able to come home.
Danielle continued: “I think it has been a really big impact on the boys, especially with my oldest, Carter.
“At the moment, I’ve just told the boys that their baby sister is really poorly.
“I feel such a lot of mum guilt because I’m not able to spend the quality time with the boys as we would like to in the school holidays.”
The children’s dad, Brendan, 33, has been a rock for Danielle during Elodie-Rose’s diagnosis.
Danielle said: “He’s been amazing. He’s been my absolute rock, to be fair, for all of this situation.”
Danielle and her family want to raise awareness of Elodie-Rose’s condition, in the hope that other SMA families will not feel alone in their fight.
Danielle said: “We want to share Elodie’s story not for sympathy, but to raise awareness.
“SMA can affect any family, and early recognition and diagnosis are incredibly important.
“By sharing her journey, we hope more people will learn about this rare condition, support research and help ensure that families facing SMA never feel alone.”
If you want to know more about SMA, you can do so here: https://www.nhs.uk/conditions/spinal-muscular-atrophy-sma/.