The next four months of my pregnancy were like a rollercoaster. There was high points and some really low ones. When we got back from Donegal, there was a letter waiting for us. We had an appointment for a scan to be done by a specialist two days later. That scan was probably the best scan we had after the baby was diagnosed. The doctor was lovely and really reassuring. She told us the spina bifida lesion was located at the bottom of her back which was really good, as the lower down it is the less damage there is. She told us that our baby was kicking and that the fluid on her brain was very mild. And we got the best news of all. We found out we were having a girl!
The doctor offered us a aminocentesis as my baby was at a higher risk for having additional problems, such as having Down's Sydrome. I refused it because there is a risk of miscarriage and after our scare I was not taking that risk, no matter how small it was!
We had scans every two weeks and when I was 28weeks pregnant a different doctor scanned me. He thought her spina bifida was higher up than Dr. Hunter had thought and it was actually in the lumbo - sacral area rather than confined to the sacral area of the spine. That was tough to hear. We knew that the sacral nerves were damaged which meant she would have bladder and bowel problems but the lumbar nerves controlled the legs, so now we were faced with the nerves in her legs being damaged. We met with a pediatrician who explained that our daughter would be just like any other child, except she would be in a wheelchair.
To cheer us up, my mum offered to pay for a private 4d scan for the following week. We thought it would be good to see her face and her little features rather than scans that consisted of measuring fluid in her head and assessing her back and leg movement. When we got there I remember me and David laughing that we didn't exactly fit in. It was so grand and expensive looking with classical music playing. And there was us dressed in jeans and trainers, while everybody else looked like they had quite a bit of money!
When we were called in we told the radiographer we already knew our daughter has sb and hydrocephalus and we were just looking forward to seeing her. It was amazing seeing her little face on the screen. She even picked her nose while we were watching her! She was moving around loads and I was really surprised because I couldn't really feel her - my placenta was infront of the baby so I didn't feel much unless she give me a huge kick! During that we were just looking at our daughter and spina bifida wasn't part of the picture at that moment. But then of course the radiographer hit us with a huge blow. She told us she thought the baby had quite a bit of fluid around her brain and when she give us her report she had wrote that her hydrocephalus was severe. So, the hydrocephalus had went from mild to severe within 9 weeks. I still had another 10 weeks to go. If the hydrocephalus continued to increase at that rate, it would start to squash her brain. That's it, I thought. My daughter is going to be brain damaged.
Thankfully, I had really good support from a forum I had joined, Spina Bifida Connection and when I posted my concerns, I got replies telling me that a baby's skull has not fused yet so there was plenty of room for the fluid without it causing pressure on the brain. I then thought she would be born with a massive head. They reassured me she wouldn't. At my next scan I told the doctor what the radiographer has said and she scanned me, and told me the hydrocephalus wasn't severe. It was mild to moderate. But every scan we went to it was increasing. I even thought they would end up delivering her early because of the hydrocephalus. In the end though they scheduled me for a C-section for when I was 38 1/2 weeks pregnant. The 9th of December 2009 was the date my daughter would be born.
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