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Hello everyone, my brother in law and myself are running our own half marathon

on 28th April 2013

to raise money for a charity very close to our hearts, TOF/OA which stands for Tracheo-Oesophageal Fistula (TOF) and Oesophageal Atresia (OA). These are rare congenital conditions of the oesophagus (food pipe) and/or trachea (airway) that affect one in every 3,500 babies. Babies born with TOF/OA need to have intensive neo-natal care prior to corrective surgery, normally within days of birth. Currently nobody knows what causes TOF or OA. In Oesophageal Atresia (OA), the baby is born with a pouch at the top of its oesophagus (food pipe) which prevents food from reaching the stomach. Prior to surgery, this pouch can fill up with food and saliva, which can eventually overflow into the baby’s trachea (windpipe), entering the lungs and causing choking.

In Tracheo-Oesophageal Fistula (TOF), the bottom end of the baby’s oesophagus is joined to its trachea (windpipe). Without surgical intervention, this causes air to pass from the windpipe to the foodpipe and stomach. It can also allow stomach acid to pass into the lungs.

Some children have to undergo additional surgical interventions later on in their lives. Whilst many children born with TOF/OA will experience only a few problems, others may have difficulties with swallowing and digesting food, Gastro-Oesophageal Reflux (where the acidic stomach contents pass back into the lower oesophagus) and respiratory problems. The effects of surgery and associated health problems can add a great deal to the usual challenges of parenthood.

My daughter Holly has just turned 2years old. She was born with this rare congenital life changing condition and subsequently has other health complications too, ranging from reflux, choking,  respiratory problems and freqeunt trips to the hospital to under go surgeries and she has to take lots of mediactions daily for life. 

Holly was born at 37 weeks by elective cesarean section due to complications with my pregnancy, I was suffering with Polyhydramnios (excessive amniotic fluid which later we found was caused by Holly having TOF) and was it would of been dangerous to let the pregnancy continue any longer risking mine and our babies life. I had regular scans due to the excessive fluid build up but no cause was picked up. I had steriod injections at 30 weeks to help our babies lungs mature and was put on high risk of premature labour and had to have my hospital bag packed ready. 

I made it to 37 weeks but as i was huge measuring 53 weeks pregnant i was taken in to deliver. There was a large team in theatre just in case but all seemed well as they checked over our precious new bundle. They handed over our small 6lb 14oz curly haired bundle and my husband and I were thrilled. I was then taken to recovery and thats when I noticed something was not right. Holly had lots of salivia coming from her mouth frothing and seemed to be gasping rather than breathing and she was gagging. I told the midwife's and they said it is normal for babies delivered by c-section to be mucasy. I how ever knew different, Holly was my 4th baby by c-section and none of my others struggled this way. After several hours and me pointing out again and again this was not right the nurse checked Holly again, by this point her lips were turning blue and she took her up to the neonatel unit for tests. My newborn baby was taken away from me at just 4 hours old and I didnt see her again for 3 days as she was transferred to Royal Manchester Childrens Hospital for emergency life saving surgery. Holly had TOF OA and with out surgery she would of died. I remember the neonatel doctor coming to tell me the news, I was still numb and drowsy from my surgery and had lost alot of blood, it was hours after the nurse had taken her up to neonatel that the doctor came and at this point I was on my own as visiting was over. He was walking towards me with 2 nurses and holding some tissue's in his hand. I instantly thought they were coming to tell me she has passed away and in those split seconds, I tried to prepare myself to hear it. The doctor came and explained that they had found this rare condition and he used the tissue to draw a diagram on whist he explained. My heart was pounding and It was all a blurr.

The night of the day she was born she was ventilated and sedated and transferred over to RMCH. no beds were available for me so I had to stay in Preston Hospital. The next morning Holly had her 9 hour surgery going in to her chest through her ribs and at only 1 day old. It was the worst day of my life waiting for news as to how it went and being so far away i felt helpless and all i wanted was to be by my babies side when she came out of theatre. Thankfully it went well, they had managed the repair and she was on Paediatric Intensive care Unit on the ventilator that she remained on for 5 days. I was discharged early so I could go and see my baby.

Holly spent 2 weeks in hospital and was then allowed home, that was  the best day ever! Since then she has had 5 futher surgeries, and is under 10 specialists. She has been in and out of hospital with respiratory problems but she is the happiest little girl i know. She amazes us every day with how she battles on. There is a rocky road ahead for Holly as she freqently chokes on food and needs surgery but with out the help,advice and support of the Tofs charity i would not of been able to get through. They are a non profit organisation and do some fantastic work helping the Tof community. We have met some wonderful Parents of children with this condition and it is un-quantifiable how much help they have given us and still do. It is a life long condition that will affect many aspects of Holly's life.

We have been able to meet other children and adults with Tof Oa all through the fantastic Tofs charity.

Any money you can spare will be much appreciated for all other tof's and future Tof's who really need support in these challenging years and help keep this wonderful charity going.

Thank you for reading my story, i am looking forward to the challenge of running 13.1 miles for all the precious babies, childrens and adults that deal with this challenging condition on a daily basis, if my baby can go through all she has and still smile, im damn sure i can and will do this! x

 

 

 

 

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