Hi this is my daughter tanesha  when she was born she looked like any other normal baby cute,pink and very alert but as we was settleing in at home getting use to sleepless nights unknown to me there was something seriously wrong with my babys heart you see when she was just 3 weeks old she was diagnosed with complete AVSD a complex heart derfect now alot of you will say what is that as i did, well it simply is a hole between the 2 top chambers and a hole between the bottom chambers and a shared valve in the  middle.

As the days passed most of it was a blur for me as the days all rolled into one, as day and night i sat by my babies cot wishing this was not happening to us but it was.HERE IS HER STORY:

TANESHA'S FIGHT WITH COMPLETE AVSD

well where can i start as soon as i hit 30 and the clock was ticking i wanted another child boy or girl wasnt too bothered like most parents but i thought the baby thing wasnt to be till i reached 35 and found out i was 7 week pregnant and had the most horrendous morning sickness ever if you can call it morning sickness has it lasted all day even had bleeding at 8 week and thought id misscarred but no i knew this baby was strong then cos this tiny human hung in there, i went to my 12 week scan everything was fine and carried on with everyday life until my 20 week scan my other 2 children came with me and again was told every thing looked fine so i went home and just prapared for my baby girl to arrive you see  i wanted a girl everybody in my family said it was a girl and they was right it was a girl i was so happy and couldnt wait i picked a name straight away and stuck with it her name is tanesha mae i said to all my family.Now my due date came and went with no signs of labour even had a sweep at 41 weeks and had horrendous pain for the next week after that then finally my waters broke and off i went screaming to hospital this was the worst labour i had had you see i also have 2 teenagers and theres was easy compared to this i had forceps because she got stuck and ended up with 32 stitches and weighed 9lb 10 oz ouch!!!Anyway the moment i saw her she was my world you see i bonded with her long before i gave birth for i wanted her for so long i stayed in hospital for 4 days due to amount of blood id lost and we was both discharged and sent home.        She seemed to be an easy baby sleeping all the time only waking for 5 min feeds then back asleep she would go but this was constant and i began to worry as she also seemed to be breathing fast so the next morning i told my midwife about it and she checked her and said it may settle in a day or two so i said ok and carried on as normal as the days passed all she seemed to do was sleep and feed then after about 2 week she started vomiting so again i got the midwife to check her and she decided to weigh her for the next few days to see how she goes on the beginning of the third week she had lost well over  70g in a week so i was sent to the local hospital to get her checked out. They did all there checks and i was sent home with gaviscon for reflux i tried this over the weekend then took her back on the monday because she had lost more weight and her breathing was becoming worse i waited for hours to see a doctor, when the doctor came he did all the checks asked a lot of questions and left the room then in came another doctor at this point i was getting anxious as the same questions was getting asked over and over again then he turned and said they wanted to get a senior doctor to come see her and then talk to me so i waited 5 mins for the registrar to come, he examined her and turned to me and said has anybody mentioned that she has a heart murmer i said no whats that mean and from this point was the worst time of my life something inside me was ripped apart i was taken to the ward while xrays and ecgs was done on my beautiful baby girl blood test after blood test was done while i sat there and cried.After all her test had been done a nice doctor came to see me and told me the xrays and ecg wasnt normal and said they wanted to do a lumbar punture but i told them no so they went to get a different doctor to come and see me, after an hour or so a nice curly haired doctor came to see me and said they dont need to do a lumbar test as he had looked at then xrays and was sure it was her heart that was the problem so  he was sending me to leeds heart unit for her to have an echo i was so scared for my baby.The next morning we was packed up early and waiting for an ambulance to transfer us to lgi ward 10 heart unit it arrived 10 mins later and off we went it took a good hour to get there and when we arrived i was sent into this room on ward 10  with a big machine that takes an echo of your babys heart and vessals i sat there holding her head still while the scan was done i couldnt tell you the fear i felt inside as i watched the doctor scanning over my babies chest, after it was done she turned to me and said there is something wrong with your babies heart i will draw it to explain to you and as she started drawing the diagram i knew it was serious she turned to me and said your baby has a complete atrioventricular septal defect and without surgery she will die and my world right there and then just fell before me, i picked up my baby and held her so close and cried  and at that point i gave my daughter to the nurse that came with me and i ran to the toilet to be sick and when i returned they had put my daughter on the oxygen and put an ng feeding tube in they said her sats was low and she needed help said i may have to be there for 4 days depending on how she did on meds. The next morning the doctors did there rounds and they got to taneshas bed and said Late diagnosis of complete AVSD  and talked through her short history as i eagerly listened and As the days went by her breathing got worse she started vomiting at every feed even though she was tube fed and she was sweating and clammy badly it was obvious she needed the op soon and thats what the surgeon comfirmed and that it was to be done on the following monday. Monday morning came and it was the worst day of my life i was took down to the theatre till she was put to sleep and with tears rolling down my face gave her a kiss then i went with my sister into town looking at my phone every 5 mins trying to pass time on as they told me it would be an 8 hours operation when in fact it took over 9 hours to get her stable so i could go see her in ICU, I was led into a room to wait for the surgeon to come talk to me i sat there crying with my sister when in walked the surgeon he looked at me and said" things went well it was very difficult like i said as her valve was paper thin and transparent but i succeeded to seperate it and i patched the holes but the next 48 hrs are critical"  When i saw her it wasnt what i expected she was swollen and her chest was left open because her heart was very enlarged there was so many wires coming from her tiny body and all i felt at that time was guilt i blamed myself always asking why me but nobody  knows why but i wanted to be there instead of her,  it was an eventfull week watching the doctors and nurses giving meds to keep her blood preasure stable and cloral to keep her sedated after a week they closed her chest and started to wake her up and slowly take her off the venterlator and i cant tell you how happy i was to hear her cry well more like a little lamb noise than a cry but it was brilliant to hear and as the days passed they prepared her to go back to HDU upstairs which was a step closer to home but when she got to hdu the morning after she didnt look right so i got a nurse to get the doctor they started her on antibiotics for infection but at this time they didnt know where,they sent off bloods and we had to wait for the results after a day she was getting no better the doctor came and said  she got a nasty infection of the blood caused by the arterial line in her neck so it was removed and she was put on very strong antibiotics she also was struggling to eat as her stomach wasnt digesting her food and it became very distended so i was told that it was suspected nec of the bowel and she had to be nil by mouth for 7 to 10 days and i just cried most of that time cos i was breast feeding and every time i held her she wanted to feed and i couldnt it was so upsetting . she was also on a pacemaker for 2 weeks as her heart wasnt beating at the correct speed on its own so to give it time to heal where the patches are they kept her on a external pacemaker i was so scared everyday as the doctor came and switched it off to see if there was any change now i sat by her cot morning and night willing and praying to god that she pull through, it affected me badly i cryed all the time didnt eat or sleep until one of the nurses said if u dont eat or sleep u will get ill then they wont let u sit with your baby so i started to eat and sleep but the crying didnt stop i couldnt help it then one day tanesha looked at me and gave me her first smile i was sooo happy that day not a tear shed because i knew there was no brain damage and that she will be going home after 2 week her pacing wires was removed and we was taken out of hdu and put on the ward we was transferred back to our local hospital for feeding issues as she still was been fed by ng tube through her nose but a week in our local hospital without the tube we made it home and she is my little warrior princess who is doing very well at the min she has a tiny vsd and mitral valve regurgation and dont know what the future holds or if she will need more surgery but we live 1 day a a time  and hope its far off i would give anything i had to the surgeon and staff that took care off her without them she wouldnt be here so i thank them all from the bottom of my heart xxxupdate 28/02/2010 tanesha scan went well took off all meds to see how she goes her blood preasure a little high for her but see her again in 2 months and see how it is then her valves still leaky but not as much as before.

UPDATE:27/5/10-mitral valve still leaking and a small vsd but no worse than before so see him again in november in 6 months 

this ward is now at risk of been closed to cut cost please publish my story and help keep ward 10 lgi open as so many heart babies and parents need this ward as travelling with a sick child to hospitals like london and newcastle would put their lives at greater risk.

UPDATE:20/08/10

Tanesha started making grunting noises while moving around so i checked her sats on my pulseoximeter and her o2 was 98 and heart rate was 79 so i took her to a n e by ambulance, they observed her at my local hospital then transferred us to lgi where she was given ecgs and an xray n echo it was then confirmed that she was in complete heart block and needed a perminant pacemaker. she had her surgery on wednesday 23 august and all went well she stayed in icu over night then back on hdu the next morning.

her recovery was brillant and we was able to go home on friday and she is going from strengh to strengh and the pain seems to be easin too so thanku again ward 10 and dr waressena for making her life better.

wrote by amanda bell mummy to tanesha mae ives 31/05/09 Complete AVSD

THANKYOU TO MR WATTERSON AND ALL THE STAFF ON WARD 10 HDU AND WARD 4 ICU WOULDNT HAVE GOT HERE WITHOUT YOU ETERNILY GRATEFULL.

We was in LGI for 8 weeks the worst weeks of my life but because of the surgeons and staff on  ward 10 and 4 my daughter is alive today and coming on in leaps and bounds and so are many more like her so i urge you all to donate to this cause and help support famlies be with there children at times like this as somewhere out there another family is going through the same thing so please DONATE!!!! and help this worthy cause. 

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