Indahs recovery and memories

Hi my name is Alicia I am the mother of Indah when Indah was born in August 2018 she was a perfect baby she learned everything quickly she was never unwell, when she was 10 months old she was with her dad at her uncles house and became blue and floppy while in dads arms her eyes rolled back and she stopped breathing after preforming CPR and calling 999 Indah began to have a seizure she was rushed to hospital and intubated as this was the only way to stop the seizure as it went on for 1 hour we was told she got too hot and all test was clear we went home after 24 hours in icu and 5 days on a ward in hospital, 4 days after being sent home Indah was shaking in her sleep we called a ambulance and they took her to hospital as a precaution after 1 night in hospital Indah had a tonic clonic seizure for 45 minutes on the ward she was rushed to high dependency unit and sedated and intubated, this is when we was told they think she has epilepsy and they will put her on medication we was devastated, we wasn’t sure what the future would hold for Indah but we knew she was strong and brave so we had to be, from June 2019 until January 2020 Indah had no seizures we thought they was under control until I got a phone call from my sister saying Indah was having a seizure when I got to her house she was in a tonic clonic seizure and respiratory arrest the paramedics arrived and she was rushed to hospital and admitted to icu she was then moved to HDU the next day then after a few days up on the ward she was then discharged with more medication from January 2020 until March 2020 Indah was seizure free then she had a seizure while we at home she was playing and chatting then went blue fell back and had a tonic clonic seizure the paramedics arrived she was taken to hospital and then admitted to icu this time Indah veins had collapsed her whole body was shutting down her temperature was 42 and rising they drilled a i.o cannula below her knee to administer medication this seizure was over 1 hour she was taken to icu our hospital doesn’t have a children icu so we are always transferred to Oxford which is 45 to 1 hour away this time I sat in the front as there was 2 nurses and a dr in the back Indah spent 3 days in icu then they woke her up because the bed space was needed Indah was taken to a ward we had to stop 3 times on the way because she couldn’t breathe her eyes and face was so swollen after 24 hours on the ward and her constant crying and breathing difficulties she was on a air-vo machine and oxygen nothing was helping we asked 4 different drs to do something we knew she was struggling eventually another dr came along and rushed her back to icu she was in and out of consciousness but we couldn’t tell because her eyes were so swollen she spent another 2 days in icu before being moved to hdu then up to a ward after a few days Indah felt well enough to go and play the swelling had gone down she was limping really bad and we was concerned she also fell over outside and grazed her face we asked for a X-ray and they said she had a fracture from where they put the I.o cannula in she had to have a full leg cast this is when Covid started we was on a respiratory ward and they shut the ward down we was very scared they sent us home a week later and we stayed inside for months as we was so scared she would catch it as she was very vulnerable, Indah was then given a neurologist along with her consultant we had many tests done all were negative, she always bounced back and continued to make progress she was slightly behind in her age but she was determined and strong Indah then had a seizure in October 2021 she had gone a long time with no seizure she was on 3 epileptic medications and was in nursery I woke up in the early hours of the morning Indah was in my bed and when I moved the cover she was blue and in a seizure I called a ambulance and administered rescue meds they sent a dr and 3 ambulances they rushed her to the hospital and then to icu she was there a few days before being moved to HDU for a few days while in HDU she had 7 absent seizures they gave her medication and they had stopped then she was taken to a ward the steroids made her gain weight extremely fast she went from 21kg to 30kg in 1 week while we was at home Indahs bowels stopped working she was rushed back to hospital she had 12 washouts multiple medications and then manual evacuation surgery she was in hospital for 2 weeks before being discharged this time Indah was different she was slower and struggled with her speech and process she was diagnosed with global development delay Indah still made progress and learnt ballet and to swim and graduated nursery she started main stream school and was getting better she then had a seizure in November 2022 she woke me up in the early hours of the morning saying her arm hurts then had a tonic clonic seizure Indah was rushed to hospital her right lung had collapsed and they was working on her for over a hour she was then taken to adult icu where they tried to wake her up she then had another seizure and she was rushed to childrens icu she spent 6 days in icu this was her longest stay she then spent 3 days in HDU I knew my baby girl was never going to be the same on the ward she was hallucinating and screaming for 26 hours and couldn’t sleep every time she closed her eyes she would scream she didn’t know who we was she was terrified they was giving her so many medications, scans and blood tests this went on for days and finally settled she was under the care of 6 consultants this is when we was given the heartbreaking news that she was brain damaged and that she was never going to be the same child as before Indah could no longer walk or talk she was now wearing nappies and reliant on 24 hour care she had to be NG tube fed she gained alot of weight she spent 4 months in hospital under neuro rehabilitation our whole lives had changed we was told if she is to have another seizure it would be fatal because her brain can’t take anymore Indah is undiagnosed and has had lots of MRI’s, lumber punctures, blood test, genetic testing, CT scans, the hospital asked for help from 3 other hospitals but nobody can give us answers nobody can tell us what’s wrong I hope to raise money for further tests, hydro therapy, physio therapy, speech and language therapy, equipment and to be able to take Indah away on holiday and make good memories with her and her sibling I would be very grateful for any donations and thank you for reading Indahs story she has been through so much more than this but I just wanted to share a insight into how much she has been through she is brave, fierce, beautiful, funny and incredible.

Alicia xxx

Indah has been making progress but still has a long way to go she has now been accepted onto a private programme after a very long wait ,with your help all funds raised will be used to provide private neuro rehabilitation, speech and language, physio therapy, occupational therapy and to buy the correct equipment to keep Indah safe at home and in the garden it will also be used to make memories as a family thank you.