In my previous blog, I spoke about a couple of those times when we received news that turned our world upside down and completely changed our expectations. Well… it didn’t stop there. At around 22 weeks, we received further news about our little one, that once again caused a whirlwind of emotions and sent us into a world of uncertainty.

It wasn’t long after we had been told that one or both of our babies would have Down syndrome, that we were booked in for another ultrasound. It was around 22 weeks (I don’t remember exact dates) and it was meant to be a simple ultrasound, a routine check, we would find out the gender of our babies and we would leave smiling again. Part of that was correct, but once again, things did not go as planned.

We did find out the genders, and were told we had a boy and a girl. We were extremely excited to find out that we were having a girl, as in our previous scan, it was suspected that they were both boys, and while we would have been super happy with 2 more boys, we really wanted a girl.

What we didn’t expect to hear was that our boy was much bigger than our girl, and our little girl, was measuring smaller than she should. It was the first sign there was something wrong. Further scanning showed there was an issue with her placental flow. Our little girl was not getting the same nutrients as her brother, the blood flow was not as strong. What did this mean?

Once again, we sat with the doctor to discuss options and what it could mean for us, and for our babies. We were told we would need more regular scans and we needed to prepare ourselves for a very premature birth. It was expected that I would likely be having the babies before they reached 28 weeks gestation.

When a baby is born before 28 weeks, there’s the possibility of life-long impacts. The chance of survival increased quite significantly after 28 weeks and if they were born too early, there was a chance of life-long disabilities. With the knowledge that we had one twin with 99% chance of having Down syndrome we were given a choice.

The options were:
1. Go through with the pregnancy and make all the decisions about when to deliver based on the placental flow of our little girl, our baby with Down syndrome or;
2. “Sacrifice” our girl and attempt to make it to full term with our boy.
Sacrifice is the exact word used. Imagine sitting in a room with a doctor, and them asking if you want to sacrifice one baby for the other. It seems crazy, but that’s exactly what happened. I have to take this opportunity to say, that our doctor was very supportive and telling us this was an option, was simply something she had to do. It was her job. So why would you even consider sacrificing one twin? If we went with option 1, it meant we could be risking both babies. If we had them too early, both of them would have a lower chance of survival and if they did survive, they would both be facing potential life long disabilities. Knowing our little girl had Down syndrome, and she was the one with the complication causing her to be smaller, her chance of survival would be even lower. If we chose option 2, it would give our little boy the best chance of having, what most would call, a ‘normal’ life without complications.

It seems like a huge decision to make, and I know the idea completely threw us. Again, it’s hard to remember exactly what happened in that moment. I do remember however, without a second thought, I said “She is a fighter!” There was no way that we were giving up on our little girl. I’m pretty sure our doctor was celebrating internally but once again, as her job, she had to make sure we were certain that’s what we wanted to do. Ben and I didn’t need any time to think it through or discuss the options, we knew exactly what we wanted. We wanted to fight! So, we said we were certain, we weren’t giving up on our little girl and we wanted to give her a chance at life.

Plans were made for further monitoring and we were told we would need to transfer our pregnancy admission from our local Hawkesbury hospital to the Nepean hospital where they had a NICU and they had the ability to care for our babies if they come as early as expected. This made it all seem real and much scarier, and aded one more thing to our list of things that worried us. We had such a great experience in our local hospital with Lincoln, we weren’t sure what a bigger hospital would mean. Would we have the same experience? Would the midwives be as nice? Would we feel as cared for? None of this really mattered though, what mattered was the babies. One thing that did help ease our mind was that the doctor at the ultrasound clinic was actually a doctor at the hospital and she would take us on as her patient. This meant she knew the history, she knew us, and we knew she would take care of us.

There’s still so much more to this part of the story but I don’t want to go on for too long, so once again, I will leave it there. I do have to mention one more thing before I finish.

Ben and I were extremely lucky when it came to having the right doctor. There are people who would have been in this situation and would have had a very different experience. From speaking with other parents in the Down syndrome community, there are many expecting parents who have almost no support from the doctors. There are some doctors out there that see Down syndrome as such a negative thing that they basically encourage termination. Imagine being those expectant parents, finding out there’s a complication in your pregnancy, and knowing that your baby has Down syndrome, and then having no support from the doctor to fight for your baby. With little knowledge about what to expect, and the possibilities now available to those with Down syndrome, people feel like they don’t have any choice and perhaps they go along with whatever they are told is best. Of course, as we didn’t experience this, we don’t know it as fact, it’s simply what we have heard from others. We hope that in the years to come, people learn more about Down syndrome, they learn to understand it, and they see the positive things that come with it. Down syndrome is in no way a negative thing and we hope that Hope will help people see that.

Don’t forget to read ‘She’s A Fighter – Part 2‘ for the rest of the story.