We first found out Craig had problems at 28wks. I had gone into early labour at 21wks and was taken to hospital in an ambluance. They managed to stop things thankfully. They were keeping a close eye on me then & I had an extra scan at 28wks. They picked up what they thought was hydrocephalus. My consultant sent me to a bigger maternity hospital but warned us that the baby would probably be delivered immediately. We were in bits. Had a more detailed scan at this hospital & they confirmed hydrocephalus then picked up a problem with the spine. They thought it was Spina Bifida so put us off to a specialist maternity hospital. Here the specialist confirmed a 'closed' spinal defect (they thought it was the least severe form of spina bifida) & brain abnormalities. They gave me an amnio. (my blood test for spina bifida at 16wks came back clear).

I was basically in hospital more than was out from then on! Had to go to the local maternity ward twice a week for monitoring, bloods, checks, scans etc. I also had to go to the bigger hospital for weekly scans. At 34wks they said he was breech. At 35wks went into labour again! Once more they managed to stop things. It was decided then to deliver him by planned section at 37wks if I got that far. They wanted to wait as long as possible so as not to add to his problems by being to early.

Had my section & he went straight to SCBU. I only got a quick look. That night when I eventually got down to see him they told us that he had 2 holes in his heart & rib deformities too. This had not been picked up on scans. They also said that is was not spina bifida. They took blood & did various tests trying to get a diagnosis instead of a list of symptoms. After a week they felt that his he was going into cardiac failure so transferred him to Yorkhill Sick Children's Hospital. He stabilised and they kept doing tests. Eventually they diagnosed Trisomy 8 Mosaicism. A very very rare condition which usually means they don't even make it to birth. There is a 3rd copy of chromosone 8 in some cells. Craig had it very severely with only 4 'normal' cells and 26 abnormal.

When he was 8wks they told us that his lungs were not growing due to his condition & that there was nothing they could do about that. We had expected this as he was just getting worse all the time. It was very hard to hear & we had to agree to withdraw his ventilator & let him slip away. He had an infection so they wanted to let him get over this first. At 9wks they took him off the ventilator & he lasted 3 more days. We knew it was the right thing to do as we didn't want him suffering unnecessarily. We got phoned over to the ward at 5am on the Monday & it was all very peaceful. We had Andrew with us & the 4 of us spent Craig's last 5hrs just in a private room cuddling Craig & making a fuss of him.

After he passed away we got to take him home for a couple of hours. Showed him the house told him where his bed was etc.

Well that is our story.

Fiona
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