Not so far no. Last month we met with a genetics consultant to discuss the diagnostics that were carried out with Tilly’s DNA after her death. Both Russ and I had submitted blood test because Tilly had shown some abnormal chromosome material. This proved to be inconclusive as I displayed the same abnormality with no physical presentation. So, where from here? Is it really worth knowing? Does it even matter?

There is still a small DNA sample of Tilly’s at St.Georges. When the geneticist told me this it felt very strange, imagining that there is still a tiny bit of her existing, sat in a vial in a lab in tooting. I know it’s nothing, it’s not really her, but still…

The sample will be sent to Great Ormond Street hospital where they have recently developed a panel test. This means that, rather than testing individual chromosomes that are identified as been responsible for seizures in babies, they can test the panel of chromosomes that are known to cause seizures. It may take up to a year to get the results. The Doctor was incredible sensitive (which is lovely, but can bring on tears) and apologetic for the poor follow up we have received and incredulous when I told her about receiving Tilly ‘s heal prick test results shortly after her first birthday.

I was also concerned that we might end up feeling that we were wasting valuable time and resources by persuing this but Dr Smithson made us feel that it was completely normal to want to know why Tilly had developed this condition. For us, it is not about having another child. We have decided that this is not something we want to do. Not an easy decision, and sometimes I feel very much that I want another baby, but it is not the right thing for our family. However, I feel that if Russ’ daughter, Laura, or Darcy decide to have children it would give us piece of mind to know that there is no underlying medical condition. Imagine if this happened to a grandchild and knowing you could have found out, surely this is reason enough.

So as we start the next stage in our lives, for Darcy that’s starting school, for Russ it will be finding a job that will bring him back to the South West. And for me? For me it is starting college and doing an Access course that will (hopefully) get me on to a midwifery degree course next year. I want to use my experience to make a real difference to other mums. I know how terrifying it is when your baby is taken away, when nobody can tell you what is wrong. I understand the all consuming grief of loosing that precious baby forever. And as devastating as it has been, I know that you can come out the other side.

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