Kiddipedia
So for most of 2017, I was pregnant with my third baby. We were finally getting our little boy. At my 12th week scan, all was going well but the technician seemed a bit concerned about the fact I chose not to do the downs syndrome screening. It felt like a normal ultrasound. I was told the baby was actually measuring bigger then what my dates were meant to be. So she moved my due date back from the 4th of Jan to the 30th of Dec.
I went along with my doctor’s appointment to get my results as usual and was given the information for the midwives to set up my appointment with them. The results from my 12-week scan weren’t exactly normal, the baby’s nasal bone wasn’t visible which I just brushed off as he wasn’t exactly in a good position. He had his face turned away and wasn’t moving. So I checked in with the midwives and booked in my 20-week scan at the hospital.
Then at my midwife’s appointment, I was informed that because the nasal bone wasn’t visible at the scan I would need to go and have a specialist scan with the FDU at Monash at 22 weeks. I had to cancel my standard 20-week scan as the specialist scan will include the standard one as well.
The day of my scan came and being baby number 3 we were pretty sure we were having another girl, so my partner and I decided that he would just go to work and will go by myself. Off I went to the hospital to have my scan. All was going well as I was told it was a boy! I was in total shock but sooo happy!
Then the technician went off to get the doctor to do their scan and gave me the news. The baby has a nasal bone but it is shortened, which means generally for someone my age (25) the chance of having a baby with downs syndrome is 1 in 1000 but with the shortened nasal bone, my chances have increased to 1 in 200.
Then I was told I had 3 options although they really only said 2 which were I could do a non-invasive blood test which is 99% accurate for determining downs syndrome or an invasive amniocentesis (needle in your belly guided by ultrasound into the sac to collect baby’s DNA) to determine the chances of him having downs syndrome. The amnio came with a slight chance of a miscarriage but was free and the blood test isn’t covered by the government so costs $450 (the harmony test). Then I could decide to continue with the pregnancy or not.
Well, there was no way I was going to abort my baby especially not at 20 weeks regardless of the test results. I was not going to risk a miscarriage and we didn’t have a spare $450 to pay for a blood test. So I chose to leave it, not find out and have a follow-up scan in a few weeks.
I left the appointment upset and in shock and trying to process the news I had just been given. I informed my partner and told him the news and he was happy to go with whatever I choose even if it meant trying to find the money to pay for the blood test. But we both agreed it didn’t matter to us if he was a special need baby or not as long as he was ok.
After a few days, I called and told them my decision and made an appointment for another scan at 28 weeks, which I asked my partner to come to with me this time, in case there was more bad news. Well lucky he did come. At this scan, we were told there was no change in his nasal bone but there was also some swelling in his brain. The left lateral ventricle was slightly bigger than what it should have which makes the downs risk even bigger.
They aren’t defining factors but they increase the risk. I was then again offered an amnio which being, further along, meant it wasn’t a risk of miscarriage it was a risk of preterm labour. We said no because it didn’t matter to us. It wasn’t going to affect our decision, we were 100% keeping him. So what did this mean for me and the baby?
I was sent off for a blood test to make sure that an infection wasn’t the cause of the swelling. I was booked in for an MRI the following week so they could get a better look at his head and was told that if the swelling went down, that was good. If it stayed the same, it’s ok. If it got bigger, then I would likely need to have a c section to deliver him.
Everything went well with the MRI there was definitely swelling but they weren’t too concerned, so then I had another scan a couple of weeks later to check on everything. Nothing had changed. It was still the same, they weren’t worried about it. All that will happen is that he will be assessed once he is born and we will go from there. After that, I had one final scan just to check everything was going well which it was and I was fine to continue with my regular appointments and wait for him to come.
This pregnancy was definitely a different experience, the extra appointments and scans weren’t anything new as I had had them with my second baby as at my 20-week scan with her. The doctor picked up a small VSD (hole in her heart) so we had to change hospitals just in case and had extra scans done to monitor it and all that.
But being given unexpected news and being told your child could have special needs, or that you might need to have a caesarean birth even though there were no problems with your first two natural births. Then all the worry and the googling to try and mentally prepare yourself. It’s scary not knowing what’s going to happen with your baby.
So if anyone else out there is going through the same or something similar please know your not alone, I reached out on a mother’s group on Facebook and found support from a mum who had just been through everything I had gone through and made the same decision I had.
I had a mum who was initially told her baby would have downs then told he wouldn’t have it only to be born with it, tell me her story and both mums share photos of their beautiful boys. I googled parenting forums and found other mums from all over that had been in a similar situation. There is support out there! Sometimes you’ve just got to reach out and accept it.
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