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my instincts saved her life

Written on 05/09/2011 20:50:51 by

allylouise

my story probably isnt like most you'll see on here....i would like to share my experience with you all in the hope that, if anyone else out there is worried they will do the right thing...it may be nothing, or it could be something that changes your life forever! By trusting my motherly instincts i saved my daughters life!!


everyone hopes for a healthy baby don't they? when my little girl was born she seemed fine but as the days passed i noticed she didnt breathe properly, she held her breath and sometimes we'd have to poke her. i mentioned it many times to health visitors and within her first 8weeks of life i had her at the doctors 4 times, with this problem...but got the same response from everyone:

"babies do hold there breath...its normal" but something inside kept naggging me and telling me they were wrong. but the more i mentioned it the more they didnt care...and dismissed the idea. even family members and my partner didnt believe me that something was wrong.. they thought "panicky first time mum"

but it continued and many nights i slept uneasy, with the audio ticker on my tommee matress sensor turned as loud as i could get it. i think as the months went on i tried to accept what people were telling me....but then my gut instincts were still telling me different!

when she was 3months old i woke in the night to here the alarm on her mattress sensor.....she had stopped breathing. i think that night reality set in and as i craddled her i knew that i would never again question what i felt was right.

after talking to my health visitor, she advised me to see a doctor and to take it further if i wasnt happy with his explanation. the doctor told me she had had a sleep apnea episode, it was a one off and there is no need to keep her on the sensor as it will continue to make me paranoid.....i wasn't satisfied. i took her to a&e where they admitted her overnight (after begging them to do something). she was hooked up to a sats machine which montiored her oxygen and heart rate, she was so unsettled and constantly set the machines off as she struggled to go to sleep. eventually i was told not to buzz the nurses anymore as the monitor was giving false readings and they were going to take her off it. but the next thing i knew i was woken up by the machine again....but this time my daughter was still, and her oxygen levels had reached a dangerous level and so had her heart rate, i ran for a nurse but couldnt find any. again trusting my instincts i ran back to her and began calling her name and rubbing her chest but she didnt wake up.

eventually a doctor came, but her alarms had stopped and she was breathing normally again...and the doctors werent really interested in what i had to say to them about what had happened. the next morning we were discharged, and i was distraught... knowing my daughter had a serious problem and no one would help me...it made me feel so alone.

again trying to forget what happend we carried on, i always observed what she did, how she breathed and finally again at 7months she stopped breathing in the night again. i felt relieved, ano it sounds mad but i finally had another chance to prove myself right!! again another trip to a&e ended in some progress. we had an appointment with a consultant.

he was lovely, i explained everything and he arranged a sleep study, but deep down i felt he thought there wasnt anything wrong. six weeks later we had the worst night i could possibly imagine, i was mentally and emotionally drained by the next morning. she had stopped breathing 37 times in the night, most of which i had to get up and rub her chest to make her breathe again.

after that night nothing was ever the same again, just a week later i phoned her consultant to ask for the results and explained that something wasnt right, she was getting worse. we were asked to attend the childrens ward the next day. as we arrived she was assessed for admission, i knew something was wrong, then the doctor came in, and her face said it all.

"we looked at ****'s sleep study results and found that there was absence in breathing during the night quite often. unfortunatly the results showed soemthing we didnt expect. we assumed the apneas were caused by an obsturction but they werent."

i asked how serious it was and she simply said "her condition is too dangerous to allow her to stay at home any longer" the words spun round in my head as i tried to understand what she was telling me.

she had stopped breathing 8 times an hour (4 being classed as abnormal) over the course of the next two weeks she was transfered to a specialist childrens hospital where she had to under go tests even an adult would struggle with, including an MRI scan and genetic testing. they concluded that she has suspected central sleep apnea , where her brain doesnt respond to her need for oxygen. we ares still waiting for the genetic results for a condition called cchs ( congential central hypoventialtion syndrome). lifes a struggle and my daughter is still not stable at night time. her apnea continues to get worse and doctors are struggling to control her breathing still, she stops breathing 400times a night, and to think no one would listen at one time....well it can even be said...

she showed signs of poor breathing at 2 days old
her first apnea episode:3 months
finally got a diagnosis: 10 months

looking back the worst day of my life was wen we got her sleep study results back, one doctor, the only doctor i trust commended me on the use of my mattress sensor and told me straight "if you havent have use it, she wouldnt be with us today!

it took too long to get my daughter diagnosed and i hope my story encourages all those mums out there to continue to push for help even when no one else believes you! my daughter has just turned 1 and her first year has been full of worry, torment and hospital visits.......dont allow anyone to make you wait for a diagnosis!!

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