This is Amanda’s story about her little girl Tanesha Mae…
Well where can I start? As soon as I hit 30, the clock was ticking and I wanted another child; boy or girl, I wasn’t too bothered just like most parents but I thought the baby thing wasn’t to be till I reached 35 and found out I was 7 weeks pregnant. I had the most horrendous morning sickness ever (if you can even call it morning sickness it lasted all day) I also had bleeding at 8 weeks and thought I’d miscarried but no, I knew this baby was strong then; this tiny human hung in there. I went to my 12 week scan and everything was fine, I carried on with everyday life like normal, then came my 20 week scan and my other 2 children came with me and again was told everything looked fine! So I went home and just prepared for my baby girl to arrive – you see, I wanted a girl and everybody in my family said it was a girl and they were right, it was a girl! I was so happy and couldn’t 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 and after that my waters finally broke and off I went screaming to hospital. This was the worst labour I had had you see, I also have 2 teenagers and their birth was much easier compared to this. I had forceps because she got stuck and ended up with 32 stitches. Tanesha weighed 9lb 10 oz – ouch!!! Anyway the moment I saw her she was my world and I bonded with her long before I gave birth as I wanted her for so long! I stayed in hospital for 4 days due to amount of blood I had lost and we were both discharged and sent home. She seemed to be an easy baby; sleeping all the time; only waking for 5 minute feeds then going back asleep. This was constant and I began to worry as she also seemed to be breathing too quickly 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 weeks 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 so I was sent to the local hospital to get her checked out. They did all the 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 and when the doctor came out he did all the checks and asked a lot of questions. He then left the room and in came another doctor; at this point I was getting anxious as the same questions were getting asked over and over again. He then turned and said they wanted to get a senior doctor to come see her and talk to me. I waited 5 minutes for the registrar to come, he examined her and turned to me and said has anybody mentioned that she has a heart murmur? I replied with ‘no what does that mean?’ and from this point on, it was the worst time of my life as something inside me was ripped apart. I was taken to the ward while x-rays and ECG’s were carried out on my beautiful baby girl. Blood test after blood tests were done whilst I sat there and cried. After all her tests had done, a nice doctor came to see me and told me the x-rays and ECG weren’t normal and said they wanted to do a lumbar puncture 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 don’t need to do a lumbar test as he had looked at then x-rays and was sure it was her heart that was the problem. 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 packed up early and waited for an ambulance to transfer us to LGI ward 10 heart unit; it arrived 10 minutes 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 baby’s heart and vessels. I sat there holding her head still while the scan was done. I couldn’t tell you the fear I felt inside as I watched the doctor scanning over my baby’s chest. After it was done she turned to me and said there is something wrong with your baby’s 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. 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. When I returned they had put my daughter on the oxygen and put an NG feeding tube in. They said her ‘sats’ were low and she needed help. They told me I might have to stay for 4 days depending on how she did on meds. The next morning the doctors did their rounds and they got to Tanesha’s 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; it was obvious she needed the operation soon. That’s what the surgeon confirmed 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 taken down to the theatre until she was put to sleep and with tears rolling down my face I gave her a kiss and then I went with my sister into town; looking at my phone every 5 minutes 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 but it was very difficult; her valve was paper thin and transparent but I succeeded to separate it and I patched the holes but the next 48 hrs are critical”. When I saw her it wasn’t what I expected; she was swollen and her chest was left open because her heart was very enlarged. There were 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 – I wanted to be there instead of her. It was an eventful week watching the doctors and nurses giving meds to keep her blood pressure 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 ventilator and I cannot 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 didn’t look right so I got a nurse to get the doctor. They started her on antibiotics for an infection but at this time they didn’t know where it was. They sent off bloods and we had to wait for the results. After a day she was getting no better so 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 wasn’t 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 because I was breast feeding and every time I held her she wanted to feed and I couldn’t; it was so upsetting. She was also on a pacemaker for 2 weeks as her heart wasn’t 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 will pull through, it affected me really badly and I cried all the time. I didn’t eat or sleep until one of the nurses said if you don’t eat or sleep you will get ill then they won’t let you sit with your baby. So I started to eat and sleep but the crying didn’t stop, I couldn’t 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 weeks her pacing wires were removed and we were taken out of HDU and put on the ward. We were transferred back to our local hospital for feeding issues as she still was been fed by NG tube through her nose but after 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 moment. She has a tiny VSD and Mitral Valve regurgitation and we don’t know what the future holds or if she will need more surgery but we live 1 day at a time and hope it’s far off. I would give anything I had to the surgeon and staff that took care of her without them she wouldn’t be here so I thank them all from the bottom of my heart xxx
Update 28/02/2010 Tanesha’s scan went well; they took off all meds to see how she goes; her blood pressure a little high for her but they want to 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
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&E by ambulance. They observed her at my local hospital then transferred us to LGI where she was given ECG’s, an x-ray and an echo it was then confirmed that she was in complete heart block and needed a permanent pacemaker. She had her surgery on Wednesday 23 August 10 and all went well she stayed in ICU over night then back on HDU the next morning.
Her recovery was brilliant and we were able to go home on Friday and she is going from strength to strength and the pain seems to be easing too. So thank you again ward 10 and Dr Waressena for making her life better.
Written by Amanda Bell, mummy to Tanesha Mae Ives 31/05/09 Complete AVSDTHANKYOU TO MR WATTERSON AND ALL THE STAFF ON WARD 10 HDU AND WARD 4 ICU WOULDNT HAVE GOT HERE WITHOUT YOU ETERNILY GRATEFULL.