To test or not to test
To test or not to test…? That was the question. Probably one of the hardest decisions I’ve ever had to make in my life. It’s not my meaning here, to influence or to dissuade. A controversial and delicate subject, that I believe, is every individual's personal choice. I hope there’ll be no judgement passed, as this is simply MY account. The test I’m talking about, is the Prenatal Screening I was offered in my 2nd pregnancy, having had Oscar.
Even before Oscar, we’d always said we’d love to have more than one child. Maybe even 3. Although we may need to take a rain check on a third, with the serious lack of sleep happening in our house at the moment. I remember thinking, very early on after having Oscar, that I didn’t want having a child with additional needs, to stop us. There are two trains of thought on the matter. I have met some parents who have a child with Down Syndrome, who want to devote all there time and energies into them. I don’t want to say having a child with DS is a lot more work than a typical child, but I suppose it comes with a few different challenges. I’m pretty sure you can do as much or as little with ANY child, it’s perhaps the wish of one child families, that their child is worth all their time, without splitting it with another sibling. A lovely thought I guess.
Chris and I were of the mindset, that Oscar would benefit greatly from having a brother or sister. To not only grow up with, but for both to learn from one other. I was very aware that after we were gone, there’d be someone around to keep an eye on Oscar. I’m not talking to care for him (I do so hope, by the time I pop my clogs, Oscar is capable of living independently) but just to look out for him. I’d never want Oscar to be a burden to a sibling, it’s not about making them a “carer” but I’d hope that they’d want to look out for their brother.
I am often asked, do I think it’s easier or harder to have a child with DS as your first born… And if the truth be told, I’m honestly not sure. Oscar was obviously our first. We knew no different. Only what we THOUGHT we wanted. Would it be easier to accept, having had a child before? Who knows?
I know that when I fell pregnant the first time, the future was full of all sorts of hopes and dreams. Such a special time. The second time was different and full of mixed emotions. So very happy that we were fortunate enough to fall pregnant again, excited, particularly for Oscar that he’d have a baby brother or sister to grow up with… But equally, it was tinged with apprehension and uncertainty. Would all be well with this baby? Would the birth be as traumatic as last time? Could I do it all over again, without the naivety and innocence I’d had before?
We were very fortunate to fall pregnant with out second son Alfie fairly quickly, so the age gap between our two boys is just 17 months (Some would say amazing… others would say very brave/silly!!!) Oscar is currently 19.5 months and Alfie will be 3 months next week. I remember telling a friend that we’d like to have another baby and them asking, quite brutally, (although I am certain it came from a good place), was I having another child to make up for any kind of failings I had felt with Oscar? As a replacement perhaps. I will admit that in those first few weeks, in the depths of feeling like I was grieving the loss of a child (ridiculous to even think now), I thought that another child might make me feel better, but by this point, I can honestly say, hand on heart, that it wasn’t the case at all. In the beginning when I had Oscar, I worried I wouldn’t love him. I didn’t feel that sudden rush of love that so many people talk about. It took me a little while to truly truly love Oscar. The ironic thing is, is that when Alfie was born, I actually worried I wouldn’t love him AS MUCH as I love Oscar. How life has a habit of coming full circle.
It saddened me recently when someone (whose currently pregnant with her 2nd and has a child with DS herself) asked me, if having had Alfie, I now feel complete. She thought she’d feel better once she could give her husband the child he’d always longed for. My heart, in that moment, broke for her. I was so upset she felt like that… I hope in time, she has peace and acceptance.
It wouldn’t have been the end of the world at all, should we have had another child with DS but for me, it was a preparation thing. I kept coming back to the same point. That last time, the biggest shock of all, was that we didn’t know. Ultimately it was my (and chris’) decision about whether we chose to have a procedure to tell us definitely if Alfie had DS. I’d love to be one of those people that was brave enough not to need to know, but I did. I am pretty sure I wouldn’t have done anything about it but if the outcome were that he had, at least I’d be prepared this time.
There are three types of Down syndrome: Trisomy 21 (nondisjunction), Translocation and Mosaicism. Oscar’s was the most common, Trisomy 21 and not passed from parent to child through the genes. Therefore there was no greater risk of having another, than the next person.
When I fell pregnant with Alfie, I was offered an appointment to see a Screening Midwife. I had decided to go back to the same hospital that i’d had Oscar at. I had mixed feelings about this. They had been fantastic with Oscar. They knew me and my background and I was familiar with them. On the flip side, would going back there bring back some pretty raw memories? Perhaps I’d feel better going somewhere completely new? But the thing I couldn’t shake, was that they hadn’t detected the Down Syndrome or indeed his heart defect. I am well aware that screening isn’t definitive, unless you have the invasive testing but I couldn’t help feeling that had they been more thorough, we might have known prior. Would I be able to put my trust in them now? As I sat and listened to the midwife, she let me know the options available to me. At this stage, I really wasn’t sure how I felt about testing. I knew the procedures could be invasive, so I wanted to hear my options and then make an informed decision.
With Oscar, at my 12 week scan we opted to take the Combined Screening. I was 33 years old at the time. The Combined Screening test measures the nuchal translucency (from scanning the baby) and two pregnancy hormones called Papp-A and HcG (taken from the mother through a blood test). This information is combined with the mother’s age and the gestation of the baby, to get a result. We were sent a letter a few days after our scan, letting us know that we were low risk (not considered likely to have a baby with DS) and that our odds were 1 in 350. You are considered high risk if you have 1 in 150 or lower chance. I remember receiving the letter and thinking that it was obviously fine if we were in this category.
The Screening Midwife had my notes in front of her from my pregnancy with Oscar. She said two things to me in that appointment, that really quite baffled/bemused me. Firstly, she circled one of my hormone levels that had come up in my bloods and said, “See, if I had seen this, I might have flagged this up, as it’s quite low”. Right, well no one flagged this up and the DS wasn’t detected, so you’re telling me that had YOU seen this, you might have suggested investigating it further? Obviously this was my inside voice again, but wow! The second thing she said, and this is no word of a lie folks is, “You ruined our record”. Unsure of what she meant by this, I looked at her confused. “Well, we hadn’t got it wrong in 4 years before you… In that we’d had women that we’d detected as being high risk of having a baby with DS. They then may or may not have had a baby with DS. But you were low risk. We hadn’t in 4 years, predicted anyone in the low risk category, only for them to go on to have a baby with DS” BRILLIANT! AND YOU’RE TELLING ME THIS WHY???? I mean seriously!!!!. Regardless of the fact that I wouldn’t change Oscar for the world but you’re telling me, I’m the only person you got it wrong for in 4 years???? I came home and told Chris and we actually laughed. I’m sure she was well meaning, perhaps trying to justify it all - but maybe she should have kept her mouth shut that day!
I was offered a CVS. A procedure that is usually carried out between week 11-14 of pregnancy and involves a needle being inserted through the abdomen. They then remove and test, a sample of cells from the placenta (the organ linking the mother’s blood supply with her unborn baby’s). I was told that I could have my 12 week scan and get my “1 in however many” number and go from there. If we felt we wanted the CVS, they would rush us up to St George’s Hospital in London.
At my 12 week scan, they were able to give me my odds there and then as I’d had a blood sample taken the week prior. With the measurement of the foetus, combined with my bloods, my odds with Alfie were 1 in 4400. Significantly better than last time.
I’ll alway remember something a friend said to me about our odds. It was a brilliant analogy. With Oscar we had a 1 in 350 chance of having a baby with DS. With Alfie, 1 in 4400. He said - You have 350 cups in front of you. One has a black dot in the bottom of the cup. Out of all the cups, you picked that cup (that was Oscar). This time you have 4400 cups in front of you and still one cup with a black dot. What are the chances of you picking THAT cup again? You’d have to be pretty unlucky… Or lucky… If I got a dot in the bottom of my cup again, I’d more than certainly start doing the lottery ;0)
At this point I should mention at both my 12 and 20 week scan with Alfie, it felt like they took more time looking at the baby. Were they being careful to cover all bases? Had I been unlucky last time with my sonographers? Were they just being thorough? Or perhaps they’d read my notes and realised that under a year previously, I’d been scanned and they hadn’t picked up any “issues”. You decide?
As it happened, a few days after my scan we were going in to the Brompton to have Oscars Heart Surgery so a CVS was literally the last thing on my mind. There was no way I could fit it in so it wasn’t up for debate. I would think about the next options…
There was also a new blood test available, only offered in 2 top London clinics. It has been discovered that a blood sample taken from the mother at any time from early pregnancy can be analysed for cell free fetal DNA, which is essentially a marker in the mother’s blood of the DNA of the baby. The result of the simple blood test, taken at 10 weeks or later, is predictive to more than 99% in Downs syndrome, 98% of Edwards syndrome and 80% of Patau’s syndrome. Something that didn’t sit right, was that it was still ONLY 99%. This wasn’t definitive and I needed it to be a certainty.
I chose to have an Amniocentesis. An Amnio is usually carried out during weeks 15-20 of pregnancy where a needle is used to extract a sample of amniotic fluid, the fluid that surrounds the foetus in the womb, to be examined and tested for a number of conditions. It’s something I don’t regret doing but I’m not altogether comfortable with admitting out loud and feel partly ashamed. I have friends who’ve gone on to have another child or are about to have one, after having a child with DS, who haven’t felt the need to test. So why did I? If I loved Oscar with every inch of my body, which I do, why would it be so terrible to have another child with DS? It wouldn’t. I actually think DS is the least of my worries when I hear about some of the other disorders a child can be born with. An amnio can’t test for all of them, so was I risking the life of my unborn child only for him to be born with a different complication? Maybe I’d find out the amnio was all clear, for my baby to be born with something they couldn’t detect. Maybe the fact that I was having the test, would mean that karma would come and bite me on the bum and when he came out, he’d be starved of oxygen and have cerebral palsy instead. All these thoughts went through my mind. I thought about friends of mine who’d struggled to get pregnant. Some that still hadn’t been able to. Some that devastatingly never would. Some that had had IVF and how they couldn’t even contemplate for one second, risking anything happening to their unborn child. I felt bad. I felt guilt. But I needed to know.
I should point out here there were obviously risks involved in having the amnio. 1 in 100 result in miscarriage. Some people are morally opposed to the screening because the test can be a catalyst for people deciding to terminate their pregnancies, should it flag up something as “wrong”. I know people that wouldn’t, under any circumstances have the procedure done and I absolutely respect their views.
Up until the morning of the amnio, I still wasn’t sure I wanted to go through with it. Chris said it was my decision and he supported me which ever route I took. I thought long and hard about my unborn child. I didn’t make the decision lightly. I had the procedure done. It wasn’t painful, just a little uncomfortable and to this day, I still feel like I betrayed Oscar.
A few days later, we were called to say all was ok. I cried when I put the phone down. Not because I was relieved, but because, sitting next to me, my little boy was smiling up at me. How could I not want another Oscar? When Alfie was born without complication, I felt guilty. An emotion I didn’t think for a second I’d feel. We’d always said we wanted more children but now I was thinking that it wasn’t fair to Oscar, that he’d have to share his Mummy and Daddy. We’re 3 months on now and I no longer feel that guilt. When I see the boys together, I see how special their relationship will be.
Friends of mine, who adore Oscar have been very open with me, in saying that if they were in the high risk category, they would proceed and have the invasive testing or blood test. They’re completely within their rights to say this. I had had the further testing after all. So why do I take this personally and feel badly for Oscar? It was in the antenatal screening waiting room a friend of mine, pregnant again, sat with her little boy, who happened to have DS. She said much like I experience with Oscar, that normally people are drawn to him, smile at him, talk to him… But this particular day was different. She said sitting in that antenatal screening waiting room, no one wanted to look at him. No one wanted to acknowledge him. If anything, they went out of their way to avoid eye contact. Because there it was. A cold hard hit of reality. They were all in that waiting room, about to find out if all was well with their baby. They shifted nervously in their seats. The truth was, they didn’t want a child like him. She understood… But it hurt.
There seems no right or wrong answer about what to do regarding further testing. Every one of us has the right to make our own decision and stand by it. I was having difficulty coming to any sort of conclusion about how to sign off the blog this week but then yesterday, I met a man, that I’m pretty sure I was meant to have met. Myself, Oscar and Alfie were in the garage getting new tyres fitted (a long story that I won’t bore you with) and Oscar was being his usual charming self, entertaining a couple of people whilst we all waited. One particular man was taking a great interest in him, asking me lots of questions about how he’s getting on, how was his heart, did he suffer with any other health problems?… I was just thinking, he knows a lot about DS when he said “my wife’s expecting in a couple of months… We know our baby also has Down syndrome”. Before I had a chance to say anything he launched into saying that they already had a son who was recently diagnosed autistic and that they figured, that with some experience of learning difficulties, they’d be the best people to have their new baby. That was it. It was like a lightbulb moment. There I’d been worrying about having another baby with potential problems and here these people were, feeling optimistic and taking it all in their stride. It was then it dawned on me… We could have coped with whatever had got thrown at us. I already knew that didn’t I. Whose to say that Alfie won’t grow up with his own issues? I heard the other day, that if our children reach 18 without going off the rails from drink and drugs, then we’ve done a good job. What I’m trying to say is, that all children, regardless of DS could come with their own set of problems. The consultant had told me that day, that around 90% of people who find out their baby has DS from having the amniocentesis, choose to abort. I was glad I met that man in the garage yesterday… One of the 10%, who didn’t appear scared. He wasn’t backing away from something he knew nothing about. He was grabbing the bull by the horns and getting on with, what was about to be, an even lovelier life.