Did you know?

10 April 2018  |  Tamsin Kingsley

Down Syndrome. I sometimes feel this is the elephant in the room when I’m out and about with Izzy. Very few people mention it in conversation with me, and if I bring it up people can look a bit awkward or uncomfortable (I exclude my close friends and family from this). Perhaps they don’t see it as worth mentioning, since they just see my beautiful baby girl as being like any other child, albeit with a few health issues. Perhaps they don’t really know what to say, having little experience of it (this is where I would have fallen before Izzy). Or perhaps they see it as a bad thing, that I won’t want to talk about because it is so upsetting. I guess this is what I am afraid of, and is the reason I feel such a sense of relief when people bring up the subject in a positive or neutral way.

One question I do get asked, often by relative strangers, and the thing that seems to intrigue people the most, is ‘Did you know?’. I have been asked this, sometimes with little to no context, to the extent that I’ve had to ask ‘Know what?’ a few times. In hospital I have similarly been asked the more medical ‘Was it a pre or postnatal diagnosis?’ so many times I have concluded that drs, nurses, physios etc. are just as nosy as everyone else, given hope little relevance it bears to most aspects of Izzy’s care.

The answer is that we had no idea that our baby had Down Syndrome until a few hours after she was born. We chose not to have any antenatal screening for either of the girls.

My reasoning for this, which I think I mentioned in my previous post, is that we would never have considered termination as an option, so I didn’t think it was worth the extra blood test! I pretty much couldn’t be bothered, along with knowing it was super unlikely, and decided it was something we’d just ‘deal with at the time if it happened’. I’ve since realised just how much more complicated it is than this, as I’ve asked myself the question: Do I regret not having the screening?

In many ways, I am glad we didn’t know. Dan’s theory is that to get the news before birth, in the absence of being able to see the beautiful baby that comes with it, would have devastated us. If that is ALL you know about your child, it will be all you think about and dwell on, throughout pregnancy (probably making various ignorant assumptions along the way). It would have been a pregnancy full of fear and tears. I wouldn’t have known if I should be excited about the baby, and whether and how I should tell other people. Instead, when we found out the news, we also could see that Izzy had dark hair and eyes, my nose and Dan’s head shape, and a perfect squidgy little baby body. We could look into her eyes and hold her in our arms and realise that there were much more important things than how many chromosomes she had.

Another reason I’m glad we didn’t know before she was born is that we never had to deal with any pressure to terminate the pregnancy. I’ve heard stories of it just being assumed that is what the parents will want to do. This is awful as well as unprofessional, but maybe not that surprising given that nice in ten women with a prenatal diagnosis will terminate.

So for our sakes, I’m super glad we didn’t know until we’d met her. But for her sake, I wonder if it would have been better to know. Let me explain.

At birth, Izzy was treated like any other baby and was allowed to stay with us for over an hour even after she seemed to be struggling with her breathing. On realising something was wrong, incorrect assumptions were made that it was primarily a heart problem, and she was treated based on this assumption. She was born on a Friday night and it was hard to get all the scans and blood tests she needed over the weekend. If we had known she was likely to have Down Syndrome, I would have had more prenatal scans, focusing on her heart and other likely problem areas. At birth, I imagine the drs and even neonates would have been prepared for her to need extra help, and we may also have been induced (not on a Friday night). It would have been known ahead of time exactly what scans and tests would need ordering, and as soon as she was struggling she would have been at least watched very closely. This doesn’t exactly sound like a stress free natural birth experience, and in Izzy’s case, I don’t even believe that any of these differences would have affected her treatment greatly. However, I can’t help but wonder if, for a child with even more serious health problems at birth, the time gained by being able to anticipate these could make a huge difference, maybe even between life and death. The argument against this is that such serious problems, particularly with the heart, should be picked up on the twenty week scan, regardless of whether the parents have had screening or not. So maybe my concerns are based more on my experiences and emotions to any actual risk to unscreened babies, but it’s certainly worth thinking about (as I definitely hadn’t when making my decision).

Obviously knowing in advance also would have given us, as the parents, time to process and research before meeting Izzy. Personally, I don’t regret not having this time at all, as I feel that Dan and I are both quite adaptable and cope better with dealing with things as they happen.

One last point to make is that I believe it would have been very dangerous for Izzy if I had had a home birth. Several midwives had recommended this to me, as my first birth had been so ‘straightforward’, and without knowing she had Down Syndrome no one would have questioned my decision if I had wanted to give birth at home. I know an ambulance would have been called and she would have been put on oxygen ASAP, but there is no doubt that it would have taken longer to get her to neonatal under the doctors experienced eyes and specialist equipment. When anyone casually mentions wanting a home birth to me now it makes me very fearful and I want to shout at them not to be so stupid, but this is purely an emotional response and I am aware that most home births are lovely, safe and positive. I just hope that people who say things along the lines of ‘if anything goes wrong they can get you to hospital really fast anyway’, have really considered that it could be them who things go wrong for. I’m not sure I did. Down Syndrome leads to a much higher risk of various serious health issues, particularly to do with the heart. I therefore hope that anyone wanting a home birth will consider screening, and anyone not wanting screening will think seriously before having a home birth.

I haven’t yet been asked by anyone whether I would recommend screening or not, probably because it is rightly a very personal decision between a couple. I wouldn’t know what to say anyway. I guess the question to ask is whether the heads up on potential health issues even from the moment of birth, is worth maybe dampening the happy buzz of pregnancy and birth itself. Overall I am personally glad we didn’t know, but the more I’ve thought about it the more I realise that it can be a very sensible decision to try and find out, especially if you are considering a birth further from good medical care such as at home or in a less developed country. 

P.S. I’ve written this to inform and provoke thought for people who, like me, are happy to have a child with Down Syndrome. There are obviously many other people for whom a prenatal diagnosis would result in life and death decisions to be made, so I may write the harder post on decision making in pregnancy at some point.

Tamsin Kingsley

Tamsin Kingsley

I am a 33 year old living in Leeds with my husband and two children. I am a full time mum and carer to Lauren, 7 years and typical, and Izzy, 5 years with Down's Syndrome. Izzy has complex health needs mostly due to her low muscle tone, and struggles with feeding and breathing, resulting in tons of appointments and hospital admissions. Both children are happy and full of life, and our family all love each other very much.

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