When I open my “Don’t Be Sorry” emails, the number one reason people often message me, is when they have had a baby with Down Syndrome and are looking for some sort of support. They’re reaching out, I guess. They’re asking how I felt in those early days, weeks and months. Asking me if it’s “normal” to feel the things they’re feeling right now. I figure they’re wanting some sort of validation, just as I had sought out when I had found out my first son had Down Syndrome, that it was OK to be feeling all the things they were currently experiencing.
The second most popular reason people message me is when someone has decided they might like to have another baby or are indeed pregnant, having had one previously who has Down Syndrome. When people write, it is usually because they have wanted to know how I felt having Alfie (my second son) or am feeling now being pregnant with my third (due beginning of August). I get it. I totally get it and although by no means an expert on the subject, I am more than willing to share my thoughts on having another child after having a child who has had a diagnosis of Down Syndrome.
Let’s just say the lady in question who has been messaging me is pregnant again. Elated. There’s a word. She’s just found out she’s pregnant and she’s over the moon. She had always wanted a sibling for her child and she can’t wait to watch their relationship grow. But mixed with that elation is fear. She’s fearful of what happened before. How, prior to having a first child, her world had seemed pretty average. Pretty normal if anything. Perhaps she had known about her first baby having Down Syndrome and made the decision that it hadn’t mattered and wanted to have her baby regardless. Or perhaps like us, she hadn’t known and when they were born, the shock literally knocked the wind out of her sails. Either way, in my opinion (and I appreciate all of this really is only MY opinion), going on to have another baby afterwards, is scary stuff.
For those of you who have been following my blog for a while, you may have read a post I wrote, called “To test or not to test – No judgement”. I wrote this shortly after I started writing the blog and just after I had given birth to Alfie, and I shared my views about extra screening/invasive testing and what I had done when I found out I was pregnant for a second time. I chose to have an amniocentesis with Alfie. I wasn’t proud of my decision. Of course, there were the risks of losing him but, in truth, I felt like I was being disrespectful to Oscar. And when the test came back that Alfie had been cleared for Down Syndrome, I cried with happiness but mainly I cried because as I came off the phone, Oscar was sat there looking up at me with the biggest smile on his face and I felt sad. Sad, that it may look like I hadn’t wanted another one like him.
At the end of that blog post I wrote that in hindsight, perhaps I hadn’t needed to have that amnio. Knowing that Chris and I can cope with life, whatever it throws at us and should I be lucky enough to fall pregnant for a third time, I wouldn’t need to have invasive testing.
So why am I sat here today, pregnant with my third, admitting to you, that a few months ago I had another amnio to check all was “ok’ with my unborn baby? I shall explain…
The truth? I thought I’d be stronger. I thought that third time round I wouldn’t need to know. But for me, the thing I couldn’t let go of was that initial shock the first time. The feeling that our world had been turned upside down. And truthfully, I didn’t think I could go through the rest of my pregnancy wondering, what if that were to happen again.
Of course I knew there were other methods of screening/testing on offer to me. I had been quite prepared to go up to Harley Street in London to have a Harmony Blood test carried out. But at a 98% accuracy rate, I figured I could still be the 2% that they got it wrong for. I’ve never had that much faith in statistics, particularly since having Oscar. When we were pregnant with Oscar, I was considered “low risk” of having a child with Down Syndrome, I had a 1;350 chance. Let’s face it, if I had 350 boxes in front of me and only one of those had a million pounds in… what are the chances of picking THAT very box? With Alfie and this current pregnancy, my odds were significantly better than the first time round, even though Oz was on my records and of course I’m older now… they were in the thousands. But it still didn’t sit right that if I’d been that one before, I could be again.
What I do know is that had this pregnancy come back that he/she had Down Syndrome, I’m certain we wouldn’t have done anything about it, but as I’ve always said, for me, the reason I needed to know definitively, was to be prepared. With Oscar, the shock was immeasurable and in those first few months I struggled. Had we had another just like Oz, sure we would have coped. Hey, we probably would have handled it way better, but I just needed to know for sure.
And for the record, out of many friends who have gone on to have a baby after having had one with DS, I am in the minority. Hardly any of them have felt the need to bother with odds, or screening, or blood tests, or invasive testing. They have been stronger than me.
Last year, a lady messaged me about her unborn baby, saying that they had had a prenatal diagnosis of Down Syndrome and that she, along with her husband, didn’t know what to do. However, she felt more at ease about it than he did. It’s not the first time I’ve received a message like this one and I felt comforted that she had felt she could approach me with her fears and concerns. I told her our story. How it was slightly different from hers and that we hadn’t known prior, so didn’t have that choice to make. I told her that Oscar brings more joy to us than we ever could have thought possible. That yes, there were hard times but then who doesn’t have them? We had quite a few messages back and forth. I asked her to do her research. Not just to think of the outdated stereotypes out there. I told her our kids were thriving. That people with DS were getting jobs, living independently, getting married. I talked of hope and sure, there were ups and downs but isn’t that what life’s about anyway?
It’s not my place to say what happened here but my point is, with this invasive testing, we are being given the right to choose. In some cases, to decide whether parents want to keep their unborn child or not. Would it be better that we weren’t in the know? If there was no testing available and we simply had to wait and see, how differently would I feel about approaching this pregnancy then? All I know is that it was my choice to make this time. I don’t judge others for the choices they make, I just ask that they remember that the reality of the situation is never as bad as your initial fears. I am well aware that even though this current pregnancy has come up as negative as far as Down Syndrome is concerned, there are other things that babies can be born with, or complications in childbirth. Whatever life throws at us, I know we’ll be fine.
I had two friends of mine round when I got the call from the hospital to let me know my amnio results this time. They were two friends who had children with Down Syndrome themselves. I had told them I was expecting the call, so when I came off the phone, I told them the results. Our reaction was interesting. There were no tears this time. Just a sense relief from all of us, I guess. Happiness, smiles, “that’s wonderful news”, “I’m so relieved” were along the lines of what came out of my mouth that day. It was after this, that we sat quietly for a second. Reflective. For we realised, we’d just celebrated that this unborn baby didn’t have Down Syndrome, even though the three of us all have children with Down Syndrome, who we absolutely categorically love and adore. What was that about, we asked ourselves? We didn’t talk anymore about it but I’m wondering if, like me, in that moment they felt just a little ashamed.
I’m sure in writing this, i’m opening myself up to fellow parents of children with DS, saying that it would have been irrelevant to them and they wouldn’t have needed extra screening or testing. I am aware of that and I fully respect their views. I also know that since writing the blog, I have had people contact me, who have said they have been in the “high risk” category of having a baby with DS and since following Oscar’s story, they feel strength and encouragement that they could cope. I love that.
It’s now up to medical professionals to follow suit and help promote, that just because you might have a baby with a DS diagnosis, that it doesn’t have to be the end of the world. It’s my hope that both screening midwives and consultants understand that it’s not the bleak outlook they might think it is for a lot of people and that a termination leaflet shouldn’t be the first thing that gets handed to expectant parents. Both my consultant and screening midwife didn’t even flinch when I said that whatever the outcome of the amnio, we would be keeping the baby. Perhaps they could see the certainty in my eyes and knew not to mess with me :0) But I know for a fact that there are hundreds of cases out there, where expectant mothers have been told their unborn baby has DS and have immediately been advised of a termination. Even when someone has already had a baby with DS, they have assumed that because they’re having an amnio, CVS or harmony test, that the reason they’re doing so, would be because they want to abort. It’s so very sad that they feel like this and all perhaps through lack of understanding
It wasn’t that I didn’t want another Oscar. Hey, sometimes he’s a lot easier to handle than my demanding little 18 month old! But what I wanted was to be prepared. To have the knowledge. To feel just slightly more at ease that this birth wasn’t going to be the foggy memory I have of Oscar’s and that I wouldn’t spend those first few days, weeks and months worrying unnecessarily about the future. I would know what to expect this way. I’m guessing if you asked any mummy of a child with Down Syndrome, would you change anything about them? I’m pretty sure they’d say no. Would they take away some of the hospital appointments, the worry over sending them to mainstream or SEN schools, the prejudices, the stares, the biting ;0)… of course they would. But would they take away the actual DS? I’m guessing not, for without it, they wouldn’t be the little person they are. That day back in July 2012, we opened the box with our million pounds in it. Our Oscar. I’d call that pretty lucky.