Luna was diagnosed when I was 20 weeks pregnant with VACTERL association
Luna was diagnosed when I was 20 weeks pregnant with VACTERL association, she went into surgery the day after she was born to have the stoma and an operation on her oesophageal-atresia and trachea fistula, she was in there for 8 hours.
Then 2 days after that she had an operation on her bladder.
She was in the NICU for 8 weeks, she was diagnosed with failure to thrive because she didn’t gain any weight and her kidney levels were not good.
When we finally got sent home she was bolus fed every 4 hours, she was sick after every feed, every time I spoke to the doctors they said it was acid reflux, even though I knew it wasn’t, there was something else.
In March 2022 Luna had sepsis and nearly died, they inserted a hick-man line and changed her tube from and NG to an NJ, she was in hospital for 5 weeks.
As soon as she left she completely changed, she was keeping down her milk and gaining loads of weight each week.
She underwent a PSARP surgery in July last year and we did anal dilations everyday in preparation for her stoma reversal, which was done April this year, whilst she had that she also had her nose tube taken out and replaced with a freka tube into her stomach.
Despite all the problems and set backs Luna has had, she is the most happy, smiley and chatty baby! Everyone who meets her are so surprised by how happy she is. She spends all day laughing and trying to make other people laugh.
Luna was diagnosed when I was 20 weeks pregnant with VACTERL association
V – Vertebra- Luna has an abnormal sacrum, we were told she may never walk but no she’s running and jumping instead!
A – Anal – Anorectal Malformation, this was repaired last year and now she poo’s like a normal baby
C – Cardio – When she was born, Luna had a VSD and an ASD. She went to a cardio appointment this week and has actually been discharged from them as they’re now closed.
T – Tracheoesophageal fistula – repaired the day after she was born.
E – Oesophageal atresia – repaired the day after she was born and has yearly dilations.
R – Renal – Bilateral hydronephroureter with bilateral re-implantation and one of her kidneys is duplex.
L – Limbs – Thankfully, no abnormalities.
Luna was diagnosed when I was 20 weeks pregnant with VACTERL association
Lunable has been in and out of hospital since she was born with multiple UTI’s, sometimes resulting in an overnight stay and antibiotics, other times just oral antibiotics and sent home. She’s also consistently had RSV and bronchiolitis which resulted in her needing an inhaler.
We’ve had a really tough two years, feeling as if there has been no reprieve and no light at the end of the tunnel, but since she’s had her stoma reversal and Freka tube she’s been much better and I’m finally starting to feel as if things are on the up.
From the owner of this website
We sent the Family one of our alloy laser cut, laser engraved, and laser printed here in England one of the medical tags found on website, to help this Family spread the awareness of this condition, along with a few car stickers also.
