DD has chronic kidney disease stage 4 (with 25% kidney function) and an acute kidney injury as a result of an injury she sustained in the neonatal unit at 3 days old. This occurred when the line pumping nutrition into her vein migrated and pumped it into her bloodstream, causing her to almost die and her kidneys to malfunction. This means she will be on medication for the rest of her life and she will likely require kidney transplants in the future. She eats a restricted diet avoiding food containing phosphates, sodium, and potassium (bananas, potatoes, dairy, oranges, tomatoes, ready meals, chocolate, etc) because her kidneys cannot process them, meaning a higher risk of heart disease, high blood pressure, etc. Because she struggles to get enough nutrition she is below the 0.4th centile for weight and height and has a BMI of just 14.
DD failed her newborn hearing screening (which she had at 14 weeks old when she was finally stable enough to leave the hospital). It was later confirmed that she was profoundly deaf with Auditory Neuropathy Spectrum Disorder - aka ANSD (a rare type of deafness where the ear detects sound normally but has a problem sending sound from the cochlear to the brain). Doctors cannot be sure whether this was because she was deprived of oxygen at birth or whether it's related to her kidney failure which has a greater link to hearing than I ever realised. DD eventually had bilateral cochlear implant surgery shortly before her 3rd birthday (delayed by the pandemic) and subsequently, aged almost 5 has the speech and language skills of an almost 2-year-old.
Since her cochlear implantation, DD is far more prone to ear infections because the surgery drilled away into her inner ear bones, meaning infections can pass swiftly into the mastoid bone behind the ear, cause abscesses and if left untreated, reach the brain, and prove fatal. DD was hospitalised for the best part of 3 months in 2022 due to mastoiditis and subsequent ear surgery.
DD suffered a bleed on the brain while in neonatal intensive care meaning she has mild cerebral palsy and needs to wear a splint on her left leg because her calf muscle is weak and otherwise she cannot bear weight on her foot. Even with the splint, she falls over a lot and can't walk as far or as fast as her peers. She has to wear an orthotic shoe on her left foot, and we source a different shoe for her 'normal' foot which is two lengths and four widths smaller.
She has so many hospital appointments that it's impossible for me to work during the day, so I've had to take an evening job instead. In addition to this, she has 4 visits from her teacher of the deaf and speech & language therapist per week.