Tanesha’s Fight with Complete Atrioventricular Ventricular Septal Defect (AVSD)

This page is dedicated to CHD’ers for their strength, hope and love.

Well, where can I start; as soon as I hit 30 I wanted another child boy or girl. I wasn’t too bothered like most parents but I thought the baby thing wasn’t to be till I reached 35 and then I found out I was 7 weeks pregnant and I had the most horrendous morning sickness ever (if you can call it morning sickness, it lasted all day; I even had bleeding at 8 weeks and thought I’d miscarried) but no I knew this baby was strong then because this tiny human hung in there. Now, I wanted a girl, 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 so I picked a name straight away and stuck with it her name is Tanesha Mae, I informed all my family.

Now my due date came and went with no signs of labour, I even had a sweep at 41 weeks and had horrendous pain for the next week after. Finally my waters broke and off I went screaming to the hospital. This was the worst labour I had had, you see I also have two teenagers and they were easy compared to this I had forceps because she got stuck and ended up with 32 stitches ouch!!!

Anyway, the moment I saw her she was my world, you see I bonded with her long before I gave birth as I had wanted her for so long. I stayed in hospital for 4 days due to amount of blood I’d lost and we were both discharged and sent home.

She seemed to be an easy baby sleeping all the time, only waking for 5 min feeds then back to sleep she would go but this was constant and I began to worry as she also seemed to be breathing fast. The next morning I told my midwife about it and she checked her and said ‘it may settle in a day or two’. 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. Again I got the midwife to check her and she decided to weigh her for the next few days to see how she went. At the beginning of the third week she had lost a total of 70g in a week, 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 were getting asked over and over again. The Doctor said ‘they wanted to get a senior doctor to come and see her and then talk to me’. I waited 5 mins for the registrar to come, he examined her and said ‘has anybody mentioned that she has a heart murmer?’ I said ‘no, what does that mean?’ and from this point on it was the worst time of my life, something inside me was ripped up. I was taken to the ward while x-rays and ECG’s were done on my beautiful baby girl, blood test after blood test was done while I sat there and cried.

After all her tests had been done a nice doctor came to see me and told me the x-rays and ECG weren’t normal and that he was sending me to Leeds for her to have an ECHO. I was so scared for my baby.

The next morning we packed up early and were waiting for an ambulance to transfer us to Leeds. 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 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 babies chest. After it was done she said ‘there is something wrong with your babies heart. I will draw it to explain to you’. As she started drawing the diagram I knew it was serious I said to her ‘is there treatment?’, she said ‘yes, but only open heart surgery’. This was when my world just fell before me. I picked up my baby and held her so close and cried and I said ‘and if she doesn’t have the surgery, then what?’ and she said ‘then she will die 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 were low and she needed help and informed me that I may have to be there for 4 days depending on how she did on meds.

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 operation soon and that’s what the surgeon confirmed. I never made it home, in fact, I was there for 8 weeks as she went through surgery, battled blood poisoning and nec of the bowel, and was on a pacemaker for 2 weeks but we made it home.

She is my little warrior princess who is doing very well at the min who may need more surgery as she grows but I take each day as it comes and hope it’s far off. I would give anything I had to the surgeon and staff that took care off her, without them she wouldn’t be here so I thank them all from the bottom of my heart xxx

Wrote by Amanda bell
February 2010

Mummy to Tanesha Mae Ives
31/05/09 Complete AVSD

Amanda Bell has given CHD-UK permission to use the photographs on this page.