The beginning

10th of June 2015 was the happiest day of our lives. The moment we had been waiting for. But in less than 48 hours our world started falling part. Looking back the warning signs were there even before Diyanna’s birth. I wish I knew then what I know now.

During the last trimester of a pregnancy babies do all sorts of acrobatics inside the womb. Kicking, pushing, punching and turning. I never had that with Diyanna. During my third trimester all I felt was occasional small movements, the pushing against my lungs and her hiccups, which always started at 11.00pm almost every night.

It was my first pregnancy, I didn’t smoke or drink, I never had sugar issues and I never had any complications. Hence I was considered a low risk pregnancy and was looked after by my GP and the Midwife at our local hospital. When I questioned about the movement both of them said that its probably because I was small in size and Diyanna being a tall baby for her age didn’t have enough room to move and was stuck in one position. Her scans, her heartbeat and her growth, were all normal. I was reassured that when it was time for her to come out that she will slowly turn to the right position.  I didn’t question it further. She never turned and now I wish that I had looked for a second opinion.

The last two scans that were taken of her during week 32 and 36 confirmed that she was in the extended breech position. I was given two options. The first one was to do a procedure called external cephalic version (ECV) where they obstetrician applies gentle pressure to turn the baby. The second was to do a cesarian. I was not comfortable with the ECV as I felt that it might hurt her. So an emergency cesarian was scheduled for the following week. Because of this, they were not able to test the anaesthesia on me for allergic reactions.

I worked until the day before she was born. We were scheduled in for 2.30 pm but there were few delays and finally we went in at 4.00pm. Getting her out was quick. She didn’t cry straight away but she eventually did and was given a good Apgar score. By this time I had started to feel sick and when they put her on me I started vomiting. They had to give me more medication to calm me down and stop the vomiting. Stitching me back up took longer than normal and there was a complication. The rest of the night for me is hazy. I was exhausted and sick. The one thing I do remember was that Diyanna was perfect.

She was a quiet baby. She didn’t cry or fuss. Trying to feed her the 1st day was hard. I couldn’t get anything and she wasn’t ready to suckle. By the end of the day I still couldn’t feed her and as I wanted to breastfeed her, I was not allowed to feed her with a bottle. But the nurse over night was kind enough to listen to my concerns and gave me a bottle to give her. Diyanna finished it with out any problem.

The next day we tried again to breastfeed her but it wasn’t working and I was till not able to get any milk. While changing her dipper I noticed a stiffening of her arms and legs. It was a bit strange as her arms and legs were locked in to that position. When I told the nurse she told me not to worry (I would later understand that this was the 1st signs of Dystonia). That night her temperature started dropping and she looked pale. They test her for Jaundice and put her in a incubator to keep her temperature stable. I was not able to give her a bottle that day.

The next day things got worse. Diyanna was limp more floppy than the first two days her colour was very pale and she was not regulating her temperature. She was taken straight down to the Neonatal unit. Watching her being taken away not knowing what was going on with her broke me. I couldn’t stop crying. I couldn’t stop worrying. Little did I know that worse news was to come months after this event.

That day I got a sick feeling in my stomach, which has never left me.