This is a story from Tanya who contacted me via this site after finding she had the same diagnosis as we had with Rosie.
A Story Of Hope
It all began for us back in July 2007 when we had our first visit with our obstetrician, I was really looking forward to meeting her and getting a look at our baby on the ultrasound machine plus I had always believed that 12 weeks was the official “safe “ time when we could begin to tell everyone of our happy news. It was our first pregnancy after trying for 3 years for a baby we decided to venture into the world of IVF and luckily after our first attempt I was expecting!
I was so excited and when the doctor told me there was some extra scans that I could have done, I jumped at the chance to have another look at our little creation so I booked in without hesitation. This particular test was a screening test called a Nuchal Fold scan and to be perfectly honest, I remember sitting in the waiting room and they were running behind so I picked up a pamphlet and started to read what they were actually testing for, after all I was only there for the dvd of our baby! I seen that the odds of us having a baby with downs etc was quite low due to our age and I remember thinking that this would never happen to us.
Finally it was our turn and we were led into the room and after being scanned for almost 30 minutes and the sonographer not saying much, I still didn’t pick up that there might be a problem, the baby wouldn’t move so they could get an accurate measurement of the fluid behind the baby’s neck, so I was sent away to have something sugary to eat to encourage it to move around a bit.
When we came back they explained to us that they were concerned about the amount of fluid at the back of the babies neck and when they got an accurate measurement they informed us that it was bad, real bad in fact the largest amount that they had ever seen a normal measurement is about 1-2 mm and ours was 10.5mm!
They kept saying how sorry they were for us and I was like what is that it is there no chance for this baby at all??????
We were taken into the bad news room and then the midwife and doctor came in to talk with us. The thing I remember most about that day is the way they looked at us, like they felt so sorry for us. It was explained that due to the amount of fluid the baby had a one in 2 chance of having downs and the worst was yet to come, they said I would likely miscarry in the next few weeks anyway and the baby wasn’t expected to survive the pregnancy, and if it did they said it probably wouldn’t be life compatible! Maybe our baby would live for a few hours after birth if we were lucky!
We were floored, we left there in a daze, me a sobbing mess, and I just couldn’t comprehend what they were telling me, it had only been an hour before that we were sitting in the café and making all these plans for our baby, now they are saying there is no hope for this pregnancy! They sent us home with a dvd of our baby and I watched it and watched it. Maybe I was in denial but I remember on the way home saying to my husband they are wrong about this baby, surely I would know, I was carrying this child and I didn’t feel like there was anything wrong. We were sent home to wait for the inevitable to happen, I felt like we were put on baby death watch, it was horrible.
The doctor suggested that I have a cvs done (where they remove some placenta for chromosome testing) it was the longest wait of our lives and we were imagining the worst, the results came in a week later by phone, the baby had Turner Syndrome and so that in fact meant it was a little girl.
We met with some genetic counselors and they simply confirmed the diagnosis however they were slightly more optimistic giving her a 5 percent chance to survive the pregnancy! This was better news as far as we were concerned where there's life there is hope, right! They explained about possible heart complications and I kept saying maybe she will be alright and they were saying its unlikely, we were advised to terminate and even our doctor said why would you want to keep this baby, just try again! We were again amazed at the attitudes of some of these people, they all thought we were a little niave to continue but they suggested to induce labor now, but at 15 weeks she would be born alive and I couldn’t handle that, if she was going to die it would be on her terms. We created her, she is fighting so hard in there how could we do that to her she was after all our daughter now! I cried for weeks and weeks, I didn’t want to get out of bed most days. A few days after her diagnosis my husband lost his finger due to an infection he picked up in hospital and ended up requiring several operations, and eventually an amputation and that also meant several months off work, being a business owner and an electrician this particular injury was not good news either!
I would sit at the computer searching the internet for something different than what the doctors were telling me, it was all pretty bad news out there, but finally I stumbled on a lady named Louise and a story about her little girl Rosie, it seemed to be almost exactly the same as mine! But her little girl survived against all odds and seeing the beautiful pictures of that baby girl gave me hope that maybe there was a chance for my girl too.
We left our obstetrician in favor for a high risk professor and continued on with this journey, most days not at all expecting to have a baby at the end of it all, but hoping none the less. We had fortnightly scans to check on the viability of the fetus as they called it and every scan was harder than the last, they would tell me don’t expect to hear a heartbeat as its just a matter of time!
She went on to accumulate fluid in her lungs around her heart and in her belly and it was really looking really bad for her at that stage, we needed a miracle to turn it all around! We persevered and the hardest part was I was 6 months along and obviously showing, people would want to talk about the pregnancy and congratulate and it was all I could do not to break down every time! We didn’t buy anything until about 7 months into the pregnancy when her fluid started to regress and week by week the doctors were pleasantly surprised by her growth and will to live, maybe there is Hope for this baby yet! Although my professor wouldn’t let me relax fully as he explained that lots of these babies still away pass at this late a stage in the pregnancy and some are even born still, we slowly allowed ourselves to think that just maybe we are going to have a baby after all, she was due in just a few short weeks and we needed to prepare.
We had one last scare when her amniotic fluid dropped too low and I was induced at 39 weeks, she was born kicking and screaming weighing an healthy 6.5 pounds much larger than they were predicting! She was taken away to the intensive care ward and had heart surgery at 4 days old, she is such a little fighter and so determined to have her way. She has been home now for 4 weeks and baby Hope is doing really well.
Everyone says to us oh you poor things you have had so much bad luck! but we see ourselves as the lucky ones, our baby girl beat the odds and you cant ask for better luck than that!