My name is Laura and I am from England. I am happy to share the story of my miracle daughter, Holly May, who was born a perfectly healthy baby on the 19th December 2007, despite being diagnosed with a large cystic hygroma at just 11 weeks pregnant.
She is our first child. I suffer from polycystic ovaries which makes it really hard for me to get pregnant. She was a miracle from the start in our eyes.
Our first scan was June 6th, 2007 and we were really excited and so were our families - first grandchild on my side and second grandchild for Gary's side. We went in for the scan, assuming we would be in and out and Gary could go back to work. We went into the room and I lay on the table very excited. We saw our baby's heart beating away on the screen. That was fantastic, but then came the bombshell which changed everything.
The lady who was scanning me said "I can see a problem with baby." I will never forget those words because I went numb. She told us that our baby had a large cystic hygroma extending from the chest over the head and down the back to the bottom of its spine. The cystic hygroma, which, in a nutshell is like a giant bubble of fluid, measured 12mm. The baby was only 30mm, so it was nearly half as big as she her whole body. They said any cystic hygroma beyond 3mm is serious and the prognosis was not a good one.
We were devastated to say the least, numb and shocked. We were told that the chances of survival were not good and also that she would more than likely have Turner's syndrome (which happens in girls), Down's, Edwards syndrome, or another chromosomal problem. They also said there was an increased chance of heart and organ problems because the extra fluid would put extra pressure on them. Also there was a high chance that I would miscarry.
We were sent to the other side of the hospital to see a specialist and she confirmed what we had been told. We couldn't take it in, we were both in tears. We asked if there was anything we could do . . . there must be something: "Can they not drain it away?" The answer was no and there was nothing to be done.
She said most people in your position with a cystic hygroma this big at such an early stage of pregnancy (11 weeks) terminate. I felt physically sick and I was crying loads. We were told they could draw some fluid from the sack that the baby grows in and do a full chromosome count, and we would find out the full results within 4 weeks. We decided to go for the test: we had to, we couldn't just terminate. We had to give our baby a chance and it was the best decision we ever made.
The following day we had an appointment at Liverpool Women's Hospital. It was all arranged so quickly, which made us realise that this must be serious. We had a long wait, because they had fit us in at short notice. The specialist explained what was going to happen and did a scan to confirm the cystic hygroma. The whole procedure wasn't nice - I won't say it didn't hurt because it did, but I would do it all again. After they had done the cvs I fainted, and because I had to hold a lot of water in for the scan, I wet myself when I fainted. I was really embarrassed, but I couldn't help it. My muscles must of relaxed when I fainted. They took me to a quiet room where I had bloods and an anti-d injection because I have Rhesus negative blood. I felt like a pin cushion by the end of the day and just wanted to get out of there.
We would find out some of the results in a week, and the full results in 4 weeks. The phone call came a week later - she asked me to confirm my name and date of birth, I was crying before I finished telling her because I knew this was it, the moment of truth. She said the first lot of results have come back OK, your baby doesn't have Down's, Edwards, or Turner's syndrome. I could have kissed her! I must of said "thank you" a million times. She said we would get the full chromosome count results within 4 weeks. I can't begin to tell you how I felt. It had been the longest week of our lives and I felt like a ticking time bomb. I was on the phone for the rest of the day telling everyone the good news. I knew then that my baby was a fighter.
We waited 4 weeks and the full chromosome count came back normal. We couldn't believe it: it was just four weeks before that we were told there was no hope and advised to terminate. Then we found out that she does not have any of the three conditions they tested for and also that we were having a girl. We were told that if it was a girl, that the chances of her having Turner's was extremely high - over 50%. So that's 1-0 to us, so far! She is a fighter, like Rosie, Louise's daughter - out to prove the doctors wrong!
I was scanned regularly throughout the rest of the pregnancy to monitor the fluid on the baby. Amazingly, as time went on the fluid began to get smaller and smaller, and towards the end was just on the back of her neck. She had a heart scan done at 20 and 30 weeks to check her cardiac development and to make sure the was no fluid on her heart. The doctors were amazed by it all. They said this is very rare for it to all disappear.
I was due on Christmas Eve. They had been keeping a chart all the way through to monitor her growth and towards the end she wasn't growing which meant that my placenta was failing. At that point it was best to induce me before any further problems occured. I was induced on Tuesday, December 18th at 8.30am. It was a long few days! my contractions started at 3.30pm that afternoon and were coming every 3 minutes for the next 15 hours, till finally I couldn't cope and asked to have some meds, something other than paracetamol. They checked me and I was only 3cm dilated. It was taking forever to fully dilate to ten. So they stuck me in bath . . . again - this was 3rd one in 12 hours. Still I wasn't dilating anymore, so they put me on pitocin and gave me an epidural, which was amazing. From then on I was much more relaxed. I could feel tightening, my contractions, but the pain wasn't there and before I knew it she was on her way.
When they said she should be here soon, Gary looked at me and we thought, "This is it, the moment of truth!" We's had all the tests, but nothing is ever 100%.
Holly May was born at 12.36pm - dinner time, on December 19th, weighing 5lb 12oz. She was absolutely perfect, spitting image of her Dad! We cried loads and so did everyone in our family! We were just so relieved that it was over. They checked her over and other than a broader neck which is probably because her skin stretched with the fluid, she was fine.
We had to stay in the hospital until the 21st because she was small and wasn't feeding well, but eventually she did and we were home for Christmas. She is the best Christmas present we could ever have.
She is now 8 weeks old and 10lb, she is doing just great. She is very active, arms and legs going all the time, and she smiles alot. On Gary's side there are 4 grandsons, and Holly, so she is spoiled to bits.
I hope that this gives you hope if you are in my situation. Looking back now it's like it never happened - but of course it did. I never thought back then I would be giving encouraging advice to others, telling them that it can be OK. At the time it was the end of the world for us, but look at us now! We are just so glad we made our own decision about the situation and didn't listen to the doctors. We gave her a fighting chance and we have been rewarded with a beautiful little girl.
I would like to say a big "thank you" to Monica from BeNotAfraid who put me in touch with Louise with Rosie and Emma with Isaac. Both had children with fetal cystic hygromas and are from UK. They emailed me throughout, helping me along when I needed their advice. I really appreciated it, they helped me tremendously. Thank you! And thanks to you all for reading Holly's story.