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Episode 437

Julie Mathers – pregnant at 42, down syndrome, two under two

In today’s episode, Julie shares her journey and all the beautiful lessons she’s learnt along the way. At once ambivalent about motherhood, her first pregnancy ended in miscarriage and proved that she did have a yearning to have a baby. Two failed rounds of IVF followed and then she fell pregnant naturally at 42. The NIPT results showed high risk of Down Syndrome and Julie was advised to terminate the pregnancy. Together with her partner Tom, they opted to continue with the pregnancy and welcomed baby Woody via emergency caesarean. Only fifteen months later she birthed baby Alfie. Julie talks at length about mothering a child with Down Syndrome, the dreaded daycare germs, physical therapy and the precious bond between her two boys.

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“I didn’t think I would have children. I don’t know why, I just wasn’t overly maternal. And then Tom and I had a really honest conversation about it, about three months after we met and I was honest and said that if he definitely wanted kids, I couldn’t guarantee it. Of course, he finally convinced me.

“We got married in 2013 and I ended up falling pregnant in December 2014 but I miscarried. It was quite confronting and overwhelming. I was really sad because I had been so excited and I felt emotionally tied to the baby already. I even get emotional now thinking about it even though it was such a long time ago. It did make me think that I definitely did want to be a mum.

“So then we didn’t really think about it too much for a bit, I think because we found it more emotional than we thought it would be. We decided that we’d just see what happens in regards to another pregnancy and then in 2017 we started IVF. The first embryo transfer didn’t work and neither did the next round in 2018. I was 42 then and Tom and I thought it probably wasn’t meant to happen for us.

“And then I just randomly got pregnant and found out when I was on a detox in Thailand. We didn’t get our hopes up at the start just because of the experience we’d had previously. I just wanted to get to the 12 week mark and then think about it more. But then we discovered through the harmony test that Woody had down syndrome. The test showed a 95% possibility of having trisomy 21. It was a very confronting few weeks.

“We actually had many discussion through IVF, in fact. Our embryos were tested and I find it quite difficult now because some of our embryos were labelled as ‘abnormal’. At the time, I didn’t think much about it, but now having woody, I don’t like the language. I wasn’t massively surprised with the news, but it was still ridiculously overwhelming to process it. It’s actually a bit of a blur for those few weeks as well. Tom and I were a bit dazed and confused throughout the whole thing.

“As soon as I found out I went to Google and oh my gosh, now I know the down syndrome community’s amazing and a beautiful thing to be a part of. But at the time, when I was pregnant, I didn’t know anything about that. And all I could read was online and it was quite challenging. My obstetrician didn’t know anything about down syndrome either. The assumption was completely made that we would terminate. As we found out our obstetrician said he could book me in for an abortion next week. Many of his patients who had the same diagnosis had terminated and he explained that there’s just no knowing how high or low functioning Woody would be.

“I was trying to process the whole thing and I thought I wanted to go through with it. I almost wanted someone to tell me it was the right decision. I remember talking to my dad and my dad, who’s just like the best human ever, reminded me of my values and I was really grateful for that.
Tom and I talked about it last night, actually and we said that if we had made a different decision, it would have eaten us both up massively. We’re not sure we would have survived as a couple because I think naturally we would have just tried to blame the other. But it is such a challenging time because you are basically given a time period to make a quite frankly, life changing decision.

“And as soon as we admitted to each other that we wanted to continue with the pregnancy, it felt like an enormous weight had been lifted; we felt that we could finally be really, really happy. At our 15 week scan they were pointing out all the markers of down syndrome like it was a bad thing and all we could see was a beautiful baby; you just go into protective mode. Tom can really vividly remember his nose from that scan. I saw that nose then, and I see that nose now on Woody now.

“Fifty percent of children with down syndrome have congenital heart defects so we were sent for a scan and the specialist could see that Woody had a small heart with a hole in it and some of the tubes were going to the wrong place. They were still functioning but he did say he would need heart surgery likely after birth but in the end he didn’t. Woody is four now and he still hasn’t had surgery.

“I was keen to have a vaginal birth simply because I just wanted to experience it but that turned on its head because at the 34 week mark, we had a scare because scans showed that he wasn’t growing. I went into hospital to get an injection for his lungs and I never went home. They were monitoring his heart rate and it was just dropping and I needed an emergency caesarean. My obstetrician’s experience and professionalism really counted at that point and both Tom and I felt really safe. He had command of that room and iit was amazing. Everyone involved in his birth and the special care were just brilliant.

“There weren’t any massive surprises because we knew so much about him. I kind of felt we were as planned and prepared as we could be. It’s really more of a developmental thing that you just need to monitor with time. He goes to school in 2025 and that’s terrifying because we don’t know whether he’ll go to a mainstream or a special school. What we’ve done so far is just celebrate his wins. We’ve also got to think about our mental health without getting overly stressed about it, because otherwise, I think you can get yourself into a real spin over it.

“I’m quite an introvert and I quite like doing things on my terms in a way so I didn’t connect with support groups. We wanted to experience our journey, which could be completely different to someone else’s. As he’s got older we’ve sort of gone into the community a bit. It’s great for him to see other kids with down syndrome as well. But everyone’s journey is so, so different.
I’ve met some parents and their children who are still feeding through tubes at the age of ten or older and others who are pretty high functioning.

“I try to be really positive about everything Woody does. I just don’t compare and I always stay crazy positive about Woody because I think he’s a genuine gift to us. And I just love being in his presence. I just love it.

“I didn’t think I’d get pregnant again because of my age. Woody was born in February and in October I remember saying to the team in my office that I was exhausted. I had HG with both pregnancies and I got that feeling so I did a test and it was positive. It’s quite special to watch Alfie with Woody, they just see themselves as brothers, it’s not complicated.

“I was 44 so my risk of having another baby with down syndrome was high again but To and I knew we’d make the same decision again. I knew I would need another caesarean because of the short gap between births. I knew what to expect this time. I knew I needed to get up the morning after, have a shower, and get moving. On day three I wanted to be discharged to go home to Woody and introduce him to Alfie.”

Topics Discussed

Down syndrome, Emergency caesarean, HG, IVF, pregnant at 42, Two Babies

Episode Sponsor

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