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    SUPPORTING CHILDREN WITH CONGENITAL HEART DISEASE

    A chd battle - Tanesha's world

    by Amanda Bell

     

    Tanesha1

     

    Tanesha was born on the 31st may 2009 at 5.55am weighing 9lb 10oz 14 days late after a normal but painful pregnancy (morning sickness throughout, spd ,sciatica) 2 scans and a very painful forceps delivery leaving me with 32 stitches but I didn’t care I had my beautiful baby I stayed in hospital for 4 day cos I was on a drip for blood loss and Tanesha slept most of the time maybe waking a couple of times for feeds, she was a struggle to feed from day one wouldn't latch on and when she did she would come straight back off so I mention to the nurse and she said it’s probably the drugs(pethedine) I had in labour so I rested til I was allowed home .

     

    We arrived home and my family came to see her with a gift of clothes and teddies for her all while she slept, as the days went on I still struggled to feed her so a breastfeeding link worker got brought in to try help but she didn't know what was wrong as she was latching on but seemed to be fighting with it and come back off and when I bathed her I noticed she was breathing fast and bobbing her head I told the midwife and she looked at her carefully while counting her breaths which was 71 so she said she would start to weigh her and see what happens.

     

    3 weeks on now and still no better with feeding and sleeps most of the time and I'd started to notice she was sweaty and had a cold clammy feel to touch so again I told the midwife something’s wrong and she weighed her and she had lost 70g overnight so she said right we will have her in so I was booked on the assessment unit at BDGH where they checked her and came to the conclusion that she had reflux and sent me home with gaviscon so over the weekend I tried it with no improvement so on the Monday I took her back as now she had started vomiting every feed (what little bit she had) a lovely young doc came to see us and saw her vomit all over the floor as he walked in the room so he picked her up and wiped her down and lay her on the bed checked her femoral and her liver which was very enlarged and then seemed  to spend ages listening to her chest I asked if all was ok and he said i’ll just be a min and left the room then in walked another doctor 5 mins later telling me he had gone to get the registrar he listened too a few times and said they need the registrar there so I waited for what seemed like forever, he walked in the room and introduced himself and looked at  my baby said she's beautiful and listened then he turned to me and said "I'm really sorry we've found a heart murmur has anyone else mentioned it " I said no is she going to be ok ? I got no answer except that he was sending her for an x-ray of her chest and bloods doing, we went and came back and waited a doc came in and said the results showed streaks on her lungs so they wanted to do a lumbar puncture I refuse so they said we will get someone else to see you.

     

    An hour later a curly haired man Dr Kerrin came to see her he was lovely he said she didn't need the lp as he was 99per cent sure it was her heart and that they was transferring me to Leeds the next morning so all that night I sat watching Tanesha sleep as I sat crying by her cot I was so scared , the next morning they got an ambulance to take us to Leeds with a nurse when they took us into a room with a big machine and was asked to undress Tanesha and lay her on the bed straight away the doc said she is very breathless and she started the scan, my heart was pounding so much I could have sworn you could have seen it through my top after what seemed like hours scanning she turned to me and said "there is something wrong with your baby’s heart she has COMPLETE AVSD(COMPLETE ATRIOVENTRICULA SEPTAL DEFECT) I will draw it to explain" and she went got some paper and started to draw, I struggled to see it as tears started to fill my eyes I tried to ask questions but the words wouldn't come out so I kissed Tanesha and passed her to the nurse and ran to the toilet to be sick and rang my sister and family.

    Tanesha2

     

     

    When I came back out they had already put an ng tube for feeding and oxygen tubes on her she was so upset I just sat there crying holding her I'll never forget the look on her face as I picked her up she was so frightened the next few days was a blur nurses taking blood docs doing tests I  just wanted them to leave her alone it drove me insane hearing her cry all the time and not able to do anything, the docs on ward round said the same thing every morning "she needs surgery as soon as possible". She was slowly getting worse wasn't keeping anything down now and her weight was 7lb 4 and they kept her sedated most of the time cos her hr. Would hit the 200s .

     

     

    2 week after getting there the nurse told me the surgeon wanted to see me introduced himself as Kevin Watterson (god or magic hands) his words I will never forgot he said "this is a serious condition a very hard surgery we have to patch 2 holes one at the top and one at the bottom and then split the common valve and hope it don't rip cos it will be paper thin ,she has a 1 in 4 chance of dying on the table there was lots more he said a lot after that was a blur he said any questions and I just shook his hand and said please fetch her back to me and he nodded and said I will do my very best and left the room I sat in there for a good hour crying and getting my thoughts together as they was taking her down at 8 the next morning and the thought of maybe not seeing her again kept seeping through .

     

    The next morning at 8 they gave me a gown to put her in and we walked down to the theatre it was the worst day in my entire life she lay there looking at me as they placed the mask on her face I felt so guilty with tears rolling down my face I kissed her cheek and whispered i'll see you soon I walked out the doors clutching her teddy she was holding.

     

    My friend who came with me and my sister tried to keep me occupied but the pain was so bad my mind wouldn't wonder far from my phone as I glanced every few mins it seemed. Mr Watterson said it would take around 8 and a half hours it was a very long day 8 hours came and went and nothing I went and sat back on ward 10 pacing the ward after 9 hours one of the nurses said they was taking her to cicu so I could go down , I got in there and I was scared there was so many people round her bed that I couldn't even see her I had to go into a room cos Mr Watterson wanted to talk with me so my sister came with me I sat there shaking as he walked in the room and he smiled and said it went well but was a very difficult op he had had to change a few things as her valves was too thin to sew them the way he would normally and they would have ripped otherwise I was too upset to ask anything my sister asked all the questions as I listened I went over and shook his hand and said thank you soo soo much I will never forget what you have done and he smiled and left the room . We was took to see Tanesha she was so swollen tubes coming out all over and her chest was left open cos he said her heart was very enlarged they said the next 48 hours are critical.

     

    Tanesha3 

    The next 2 days went so slow they kept her asleep and giving her lots of dif meds to keep her stable her blood pressure was up and down and she had complete heart block so she was on temp pacing wires but she was doing well , I sat by her bed day n night taking breaks for food and naps, I was scared to touch her at first cos of her chest been open it took a week before they could close it so I was real happy when they did as they could try to wake her up soon so through the next week they weaned her down so they could slowly wake her I was so happy when after 2 week she opened her eyes for the first time.

     

    She went back up to hdu 3 week after her ohs and seemed to be doing well but was still on the pacing wires as her hr was too low so was talkin about putting a permanent pm in but didn't want to as it was risky so they left her for a while and just kept checking the voltage on the temp ones and they needed to get a canula in but it was a struggle as all her veins had shut down so they decided to change her arterial line in her neck and use that I was a total bitch that day flipped over everything they prodded and poked her all day told me it was guna take half hour to change it and an hour and half later they was still holding her in same position trying to get line in her neck so I flipped and was took off by the psychologist and I'm not ashamed to say that all this crippled me mentally and because of the line change she caught septicemia and had to have the line removed and they managed to get one in her arm to use for 10 days antibs I came in one morning and she was grey I thought I was losing her I screamed at the nurse to get the doc and he came and said it was cos of the septicemia and they was doing all they could and if she dint improve by the next morning they would take her back to cicu as they was nothing more they could do for her but one of her cultures and scans also showed she had nec of the bowel so she then had to go 7 day with no food just iv fluids this was complete agony for me watching her starving I couldn't hold her has she screamed for milk and I just broke down was seeing the psychologist a couple of times aweek by now it was good to get my feelings afears out as I was on my own the whole time and I did give the nurses a hard time I do hope they now forgive me for that.

     

    Tanesha made slow but steady progress and we slowly got moved up the ward closer to the door we met some wonderful people in the lgi a couple of people I spent a lot of time with I was sad to leave them but glad to be going home well back to our local for feeding cos Tanesha was still tube fed and after 8 week at the lgi tube feeding was a doddle so I was happy and after a week in Barnsley tube feeding her myself we went home without the ng tube fully breastfeeding I was so happy but scared but the nurse came out twice a week for 2 month to check her sats and heart rate and she continued to do well I continued to check her sats at home and in august 2010 I found her hr to be 55 after she had become more tired and was sleeping more so I rang nhs direct and they rung ambulance so we went back into hospital where they put her on a 24hr monitor (after me arguing with docs cos they said she looked fine ppfft) the 24 hour ecg showed she had complete heart block and we was transferred back to leeds where she had a pacemaker fitted all went well and we came back home 2 days later she still gets breathless and sweaty but this is due to her leaky valve and seems to pick up a lot of infections but she is doing great I am sooo grateful to Kevin Watterson/Warresena and all the staff at the lgi I know she will poss need more surgery as she grows on the valve and pacemaker changing but she is strong in every way, a true fighter, my little miracle xx

    Tanesha4

     

     

     

     

     

     

     

     

     

     

     

     

     

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