Rosie's Story

Our Christmas Rose
By: Louise

Our first child Matthew was born in 2004. The pregnancy and birth were easy and there were no problems or complications. So when we attended our 12 week scan during my second pregnancy in the Summer 2006, we were not expecting to have any difficulties. The sonographer began the scan and after a short while she said `I'm sorry but there's a problem`.

When we asked what sort of problem she was very vague, stating the baby had a growth on its neck which could be an indicator of something minor or something very major. I burst into tears, my husband looked stunned and my toddler looked confused. The delivery of this news was done in a `matter of fact` voice with no sympathy and I will never forget the callousness of this particular sonographer.

We were led into a room - the` bad news room` with a low table and box of tissues. A friendly midwife came and said she would try and find out more about what was wrong, but it may take a while as she needed to speak to a consultant at a neighbouring hospital. Time ticked by, we went for a walk and returned, still no contact. In total we were left for about 1 and a half hours, feeling totally devastated but trying to keep smiling for the sake of our son who didn’t understand.

Finally we were told that we could visit the consultant that afternoon. So after returning home and trying to eat something, we went off to another hospital to see this gentleman. He immediately put us at ease, he explained the reasons why baby may have this growth and told us it was called a Cystic Hygroma. It could have meant baby had a structural problem, eg in the heart/kidneys or a chromosomal disorder. He brought in a small scanner and I had my second scan of the day. After a short time he turned the screen round and explained that in addition to the Hygroma, the baby also had a lot of fluid in the chest cavity - Hydrops. The two conditions together meant the outcome, in his words was` very grave` and he was `very worried about this baby`. He reassured us that we were not at fault and it was just `one of those things`, he suggested that we attend another hospital the following week where we could have a more detailed scan.

So we had a few days wait (during which time we `celebrated` my birthday). We visited the Foetal Medicine dept of our nearby City Hospital, where we endured a long one hour wait to see someone. Finally I was led into a room for another scan, our first concern was that the baby was still alive. I immediately saw the heart beating and limbs moving. The specialist spent 5-10 minutes scanning the baby, then told me he would join us in a neighbouring room. He entered the room and advised that the situation was very serious and it was extremely unlikely the baby would survive. This was mainly because of the chest fluid which would eventually prevent the heart from beating. He re-iterated that the baby may have a structural problem and/or a chromosonal disorder such as Downs, Edwards or Turners. He gave me a letter to go in my file which stated `there is a 95% chance of foetal demise ... probably within the next few weeks`. We were told to return in one weeks time.

The following week we went through the same routine, the specialist advised that the baby was a little worse and there was nothing that could be done. He talked about tissue testing should I miscarry. He approached the subject of terminating but my husband and I had decided that we were going to give the baby a chance, we would then feel we had done all we could.

So we went back to the original local consultant and advised we wished to continue with the pregnancy. He supported us in this decision and we planned regular scans to monitor the baby's progress. The scans were very hard for me because at this early stage I could not feel the baby move so had no idea if it had died - I was advised it was very likely that it would die and I wouldn’t miscarry, just find out at the scan.

I turned to the internet for more information, this decision was a mixed blessing as I found the wonderful positive Hygroma/Hydrops stories on this website, but much of the information I found was very depressing, giving survival statistics of 1%, or more often, - nil.

As the weeks passed by my scans followed a routine where my consultant would tell me that the baby's condition was the same, but never worse, never better. But always, he commented that the baby was very active and as week 17 came and went I felt baby's movements for myself which was a huge relief. My husband remained stoically positive refusing to believe the baby would ever die. I had some bleak moments though and found myself having to prepare for a miscarriage eg I asked the midwife what I should do with the foetus and was worried that we would not get a burial if the baby died before 24 weeks.

Around week 20 I attended a scan as usual however my consultant was away. Another lady scanned me and then turned the screen round and pointed out baby's arms and legs. Yes, I said but what about the chest fluid? She frowned and turned the screen back, scanned me some more and then said I cannot see any fluid. I was astounded and asked if she was sure - it really could be a life and death question! She was sure but advised that my consultant could check at my routine scan the following week!

To make matters worse that scan was put back a further few days, so I was frantic by the time I got to see my regular consultant. I explained what had happened with the stand in sonographer and he nodded and said he would take a look. After a short while he turned the screen to me and said he agreed, the fluid had gone. It was unbelievable. He too seemed very surprised but also remained cautious saying we were not out of the woods. The baby still had the Hygroma, although the Hydrops was always the more worrying aspect.

We were so shocked but ecstatic at the same time. We told very few people in case we jinxed the good news and we continued with the scans. My detailed 21 week scan showed the brain and heart were perfect, and baby was a SHE!

We began to investigate the three possible chromosomal conditions, in particular Turners as it only affects females. My consultant was keen that I had an amnio to find out for sure what the problem was, but we refused, preferring to let nature take its course. In any case, we had no intention of aborting, whatever was wrong, so an amnio would not change anything.

So, the weekly scans continued and baby continued to grow and thrive, the Hygroma remained but was not of too much concern. At around week 30, my consultant noticed a drop in the amniotic fluid and the baby's growth was a little behind. He advised that we should consider an early delivery, perhaps at 34 weeks (Christmas week!)

I had steroid injections to prepare her lungs should delivery take place early, After attending a scan at 33+2 weeks I was told that I really needed to have her that day or the following day since the amniotic fluid was so low. I wasn’t allowed home and was admitted into hospital immediately.

My husband had to gather together some things from home and organise childcare, I was then scheduled for a section the following day.

Rose Beatrice Hope was born on 15 December 2006 weighing 4lb 4 oz. She scored top marks on her Apgar straight away, breathed independently and went to special care unit for temperature regulation and feeding requirements only. Her hands and feet were quite puffy which is a sign of Turners Syndrome, however her Hygroma had almost completely gone, with just a little loose neck skin (which will tighten over time we're told).

I remained in hospital for a week, she remained a further 3 weeks, but progressed really well and was only kept in while I tried to establish breast feeding. The news came a few days after her birth that she did indeed have Turners - the news was delivered in a very grave manner but we were so RELIEVED. She was alive and that was all that mattered, TS is not a big issue as far as we are concerned.

She is now 7 months old, she has no health problems whatsoever and is a normal happy baby. We are grateful for the medical advice we received, especially from our regular consultant, and the positive thinking from our family and friends which we believe contributed to Rosie's survival against the odds.

Louise is very interested in offering hope to parents dealing with a prenatal cystic hygroma diagnosis, as well as to those with any number of difficult prenatal diagnoses in the UK. Please visit her website and email her for more information.
The link to her page is listed under Blogs We Follow. Thank you Louise!!