HERE'S MY FRIENDS STORY -
I want to raise awareness of GBS, so other mothers and fathers and siblings don't have to go through the heartbreak we have!
Isabelle (my 5th child) was born at 31 weeks weighing in at a tiny 3lbs, 10 days previous my waters went, she was originally a twin but we lost her twin at 13 weeks. Isabelle who we call Belle was born in poor condition but once ventilated and put on NNU she remained stable! Those weeks were heart breaking for my whole family but for me it was a journey of worry, guilt and heartache.
She was putting weight on steadily, had to learn how to suck from a bottle instead of being tube fed & was complemented on how well she handled for a prem baby.
She spent 4 weeks and 2 days in the Neonatal Unit and was discharged on 14th August 2012, we were overjoyed to have her home and finally (so we thought) we could be a complete family with our other 4 children, myself & my husband!
Our family had just settled in with having Belle at home and i was loving having all my children together, when on the 23rd August (exactly 1 week & 2 days later), Belle was very quiet, refused her feeds and looked very tired, at 10pm that night i went to pick Belle up to change her and give her a feed before we all settled to bed, when i picked her up she started crying very funnily and she just wasn't handling very well at all, i noticed her breathing was funny, slow and her neck ballooned each time she breathed out! So i rang the Unit who then advised me to take her to A&E if i was concerned.
My Husband and I took her to the local hospital who were concerned about her mottled skin and they transferred her to North Manchester, Once there after an hour, she started to deteriorate rapidly, the nurses were out of the room and Belle was in a hot cot, we were just stood looking at her wondering what was wrong with her as nobody had a clue when suddenly her skin tone turned grey and her chest stopped moving, this happened 5 times and they brought her back, they tried putting iv lines in and Belle didn't even flinch i thought she had gone, they took her upstairs to the Infectious Diseases Department & nobody had told us anything, a consultant put Belle on Cpap and watched her closely for an hour!
He finally turned to me and said she can't cope on her own, she needs a rest we will have to ventilate her! The nurse then came up to me and told me to ring my husband (who had left half hour previous to be there when the other children woke up) as she said he needs to be here with you, i asked her if my baby was going to be ok and she said i don't know all i can advise you to do at the minute is get your husband back to the hospital ASAP.
They Ventilated Belle, and fed her with Morphine & muscle relaxent and put her a catheter in, what seemed like hours went by when someone finally popped their head round the door and said you can come and see your baby now, she was covered in wires, surrounded by machine and in bubble wrap, they said she was comfortable and sleeping. I burst into tears my tiny little baby was put into a medical coma! I just wanted to help her, still nobody told me properly what was going on!
A nice lady, came to see me and explained they were a special paediatric team who transport babies etc to other hospitals, they were transferring her to St Marys Children's hospital at 10am that day (24th August). I couldn't go with her so me and my husband made our own way, i was told to make sure i ate as i wouldn't be much use to Belle, i hadn't slept or eaten, i mean that's the last thing you think of doing when your baby is fighting for her life!
We arrived at St. Mary's and was told Isabelle was on PICU (paediatric intensive care unit), it was even scarier here. Belle was in coma for a few days, we were finally told what was wrong, she had contracted late onset of GBS and apparently my motherly instincts had saved her, she had pneumonia, septicemia and Meningitis! She had a lumbar puncture to confirm these, she had antibiotics and responded well to these, they started tube feeding her about 6 hours after she arrived, my baby was finally getting better :) On the 5th day i turned up at the hospital and went over to my daughter's cubicle, washed my hands etc and i looked over and my beautiful daughter was awake, eyes wide open and looking at me, i broke down and cried, i was overjoyed and relieved, belle was taken off the ventilator 2 days later and moved to a ward, they treated her badly so i asked for her to be moved back to the hospital she was born at Royal Bolton Hospital, she stayed there for 1 night and they let us take her home on the basis i brought her back every 6 hours, 6pm, midnight, 6am, dinnertime....etc.
To us this was a small price to pay for having my beautiful baby home, the hospital was about half an hour away.
This tiny little girl beat all the odds she fought and was and still is so strong!
I need to raise awareness for GBS (group B strep) as all this, could have been prevented just with a simple swab test.
The NHS DO NOT offer these tests and they should because they could save families alot of heartache!
We won't know if there is any lasting damage to Belle due to GBS until later on but we have an inkling she may have cerebral Palsy but this wont be confirmed until she is at least 2! She also has to have a neurological assessment when she is 2 years of age.
I have a lot of info on GBS if you need anything. I also have Pictures of belle when she was poorly and on the unit and today looking beautiful, happy and just simply perfect.
please visit our Facebook page Belle's Story
Many Thanks for reading our story!!
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