Our pregnancy started off great but it all started to get a bit worrying when we had a routine ultra sound. All the usual measurements were small and especially her head which was 20% smaller in diameter as normal. They couldn’t see something that was supposed to be in her head, so we had to have another ultra sound two weeks later to double check all these measurements. Due to the fact her head was smaller than normal we had to have a scan every two weeks at Östra hospital (Gothenburg Sweden) to see if all the measurements and head have changed, Freya’s head has always stayed 20% smaller throughout pregnancy.
Johanna had an Amniotic fluid test and got the all clear to enjoy the rest of our pregnancy.
The day after early in the morning (week 31) Johanna’s water broke and we went in to hospital and gave birth (which Johanna had breach – bum first basically) to a little girl 1,5kg , 40cm long and 23cm in head diameter. We had problems straight after birth as Freya had a Neural Tube Defect (NTD) above her nose (Encephalocele) and she was sent up straight to Neonatal intensive car unit.
The day after Freya was born she went in to surgery to put what was sticking out back in and the surgery went really well. Freya will have surgery again on her scar some day in the near future.
We stayed in hospital for a month and moved to Mölndal hospital (also Gothenburg) when she was strong enough. Once Freya hit the amazing 2kg mark we was allowed to bring her home :^)
Everything was going well until one day Freya started to have seizures at nine months old so it was back to the hospital (Östra drottning silvia) to have tests and a EEG, which showed that Freya has Epilepsy.


After all the tests Freya has as follows:

Undiagnosed Brain Disease / 20% smaller size head / missing Corpus Callosum / Cerebral Palsy  / Epilepsy (meds helping to keep under control) / bad eyesight she can only see about a meter before everything is blurred / a little bit of pressure on her left side of her brain because of fluids / problems with her left side of her body / can’t walk (on her own) / can’t talk / Freya needs help with everything.
Freya has a lot of energy and is a very lively girl who has the worlds best smile.

This is our amazing girl and I just wanted to explain a bit of how our Journey started.

More to follow

From

Graham & Johanna