Indira was born premature at 28weeks weighing 632gm. She underwent surgery at 2 days old with necrotising enterocolitis which left her with an ileostomy. In early February 2003 Indira underwent routine procedure to reverse the ileostomy.
From this day onwards our world came crashing down. Indira was in surgery 6hrs longer than expected and was suffering constant seizures for a week after the procedure. We were called into an office with consultants and specialists to tell us that Indura had suffered a huge trauma to the brain leaving her with 75% brain damage. They broke the news saying your daughter will never lead a normal life and will never eat, see, sit or walk. She would need 24hr care for the rest of her life - if she survived. They said she was unlikely to survive beyond 2yrs old with all her complications.
We spent 5 months in hospital until we transferred to Luton hospital for a week before being discharged home. The day we discharged, Indira had finally gained some weight and now weighed exactly 2 kilos. Indira was barely keeping feeds down as she was only taking 20ml an hour and was suffering with severe reflux so projectile vomitting was causing weight loss. Indira was constantly suffering from sleep aponeas and epilepsy so the heart monitor would be going off upto 20 times a night. We were spending more time in hospital than we did at home.
We managed to make it to Indira's first birthday weighing 3.2kilos and wearing 0-3 mth clothes. Indira's health was not improving. We were put in touch with the local hospice who we declined to see, but they turned up anyway as consultants had asked them to come and see us to convince us to make use of service. My husband went along and was really surprised at what he saw and managed to convince me to take advantage and use the services, so from Jan 2004 we started using Keech Hospice. We can't thank them enough.
Over the years we have been through hell and back with surgical procedures that were supposed to be simple but turned out to be life threatening for Indira. Indira's weight had not improved in years and she was still very ill. We had tried NG tube feeds which was worse than ever, Indira was losing weght and seizures off the charts. We finally decided on gastrostomy and nissons fundoplication surgery after discussing with other hospice families and DR's saying it was routine all would go well, little did we know how wrong they all were. Indira had 3 surgical procedures in 5 days and was on life support and put into paralysis. We was advised by DR's to call our family in to bid her farewell. This was very traumatic for us. We were in intensive care for 3 weeks at the Royal Brompton hospital then transferred for 1 week to Chelsea and Westminster, followed by 3 months at Luton and Dunstable hospital. Indira was 3yrs old now and weighed 5.6kilos but was still not tolerating feeds. She was allergic to all feeds we trailed so weight was falling off. We had to persist with gastrostomy until she was strong enough to undergo surgery for a jejunostomy. At the same time we found Indira had dislocated hips due to cerebal palsy. Again needing high risk intensive care consultants were wary of Indira's history. She was also suffering with severe secretions due to constant sickness causing aspirational pneumonia on her lungs. Indura had to start prophylactic antibiotics after hospital admissions and is still on to this day. Indira had hip reconstruction and yet again ending up in intensive care longer than expected before discharged into hospice care after having near death situation again. Indira later had 2 further operations on her saliva glands which have not helped as we were told. Her hips need surgery yet again but surgeons are worried about her safety so are discussing alternative treatment at the moment. Indira is still prone to constant infections and has seizures on regular basis the only good thing is she is a fighter and is now 14years old and has gained weight and now weighs 19kg but size of average 7-8yr old.
We have good days and bad but we endeavour to make each day memorable.