We were told that this time we would be looked after better. This wasn't entirely true. We had to push every step of the way, for ultrasounds or fetal heart monitoring. We managed to get ultrasounds at 8, 12 and 14 weeks. All showed our baby growing normally, but we still had the 19 week milestone to reach. The time came for our 19 week ultrasound. Back we went into the same scan room that we had been in a year before. they say that lightening never strikes in the same place twice, well it did for us.
The sonographer told us that the our babies abdomen was filled with fluid and was far bigger than it should have been. It was revealed that our baby had Fetal Hydrops. We had never heard of it. The doctors didn't seem to know much about it either other than they suspected it could be caused by a chromosome disorder. We were told to think about having an amniocentesis and to come back in a week's time. we spent the week at the library, looking at all the different chromosome disorders that existed. We thought it might help if we had some idea of what to expect. we returned to the hospital a week later, having decided to have the amniocentesis. We knew the risks involved, but after the pain of not knowing why our first baby died, we thought we might at least get some answers, and maybe whatever the problem was, could be treated.
Waiting for the results was awful. Our lives were suspended. After all the research and worrying we had done, the results all came back clear. There were no chromosome problems. The doctors didn't find any signs of infection either. They seemed to know as much as we did, which wasn't a lot. They sat us down and gave us two choices. One was a termination, and the other was to keep our fingers crossed and be scanned every two weeks.
There was no way we could have a termination. We knew nothing about Hydrops and neither did the doctors. It felt like a doctor saying to you "We don't know whats wrong with your leg.Would you like to have it removed?" We needed to find out more about Hydrops, and we hoped that the doctors would be doing the same, or at least get in touch with doctors who had experience of Hydrops. We thought wrong. It was also at this point that we found out the fluid was spreading throughout our baby's body.
We left the hospital and began scouring the Internet for information. None of the information we found gave us much hope for the outcome but we had read about a couple of Hydrops cases that had cleared up after birth so we were determined to find someone that could help us. we found a list of Fetal Medicine Centres in England, and looked for the one nearest to us. There was one only 16 miles away. The hospital didn't seem to be helping so we decided to help ourselves. We searched the staff lists of the Medical Centre on the Internet and found the email address of the Professor in charge. We had nothing to lose so we told him our story in the hope that he would have some advice. He rang us the following morning and said he would be willing to see us the next day. We couldn't believe things were happening so quickly.
By this time we were 22 weeks pregnant. The hospital had done nothing for us so we referred ourselves to the Fetal Medicine Unit. The first scan the Professor performed revealed that our babies head and abdomen had become very swollen and the fluid was getting worse. The ultrasound also showed that our baby also had pleural and pericardial effusions but was still growing normally. Prof was so upfront and honest with us which was great. Our last hospital hadn't told us anything unless we asked that specific question. He was totally honest about our chances of actually having a baby to show at the end of the pregnancy but was willing to try whatever he could. He said the fluid was causing such a build up of pressure in the baby's abdomen that all the internal organs were squashed into the chest cavity which meant they had no room to grow. He wanted to drain off the fluid from the abdomen to give the organs a chance to mature properly. He decided to perform two paracentesis a week. This consisted of inserting a needle through the womb and into the baby's abdomen to draw off the fluid. He drew out 270ml the first time. We watched on the ultrasound monitor as he did this and you could almost see the baby's relief as all the organs returned to their positions. He also took a blood sample from our baby's liver for further testing. This was done twice a week for about three weeks. Each time we were given good and bad news. The swelling would be going down in one part of the body and then starting to increase somewhere else. It seemed like we were just buying time. The further along we could help our baby, the better chance we would have of maybe something being done once our baby was born.
The doctor decided that instead of doing this twice a week, our baby would benefit from having a permenant drain inserted into the abdomen. This would mean the fluid would be draining off constantly into the amniotic sac. This seemed to work well at keeping the swelling down for about a fortnight. Nothing was getting worse, but then again, nothing seemed to be improving either. At about 27 weeks they noticed that the blood wasn't flowing too well through the umbilical cord. The baby wasn't moving too much either at this time so they admitted me to hospital for twice daily monitoring of fetal movements and daily ultrasounds. At 27 weeks and 6 days, the ultrasound showed that the abdominal drain had blocked and the fluid was beginning to build up again. They decided it was time for an emergency caesarean. They had one last go at draining off the fluid from the abdomen and around the lungs to give our baby the best chance after birth.
Georgia Ellen Cotterill was born later that day weighing 2lbs 7.5ozs. She needed ventilating straight away but apart from that was quite stable. She was taken straight to the Neonatal Unit. We had been told that she probably wouldn't survive birth so we had got over the first major hurdle. As Georgia was so premature, she not only had to fight against Hydrops, but also had under developed lungs and her kidneys didn't seem to work either. They seemed to be performing tests on her all day every day. Everything came back clear. They just couldn't understand why the fluid seemed to keep being produced, or where it was coming from.
On day 5, the doctors still hadn't found a cause. They weren't making any forward progress in anything they had tried and Georgia's kidneys still hadn't worked. They called in a Renal Specialist to see about putting Georgia on dialysis. The success rate of dialysis in babies so young was pretty slim but we had to try something. Like everything else that had been tried, the dialysis seemed to work well at first. As time went on, georgia began to retain more and more of the fluid that they were using to flush through her kidneys. On day 7, Georgia's condition began to deteriorate quite quickly. Her kidneys still weren't working, she was on full ventilation and maximum doses of all the medication she was receiving. There was nothing else the doctors could do that hadn't already been tried. Georgia was slipping away.
With dignity, Georgia fell asleep in our
arms on 15th October 1999, aged 7 days.
Most people can only
dream about Angels.
We got to hold one in our arms.
The post mortem also found no cause for Georgia's condition. They have given us chances of Hydrops ocurring again at 100:1 of our pregnancies. Without changing hospitals, we would never have got to meet Georgia.
