Welcome to Illinois

Waking up in Illinois

(Or: What it is like to find out your unborn child has Down’s syndrome)

Day one
The phone rings. I must have been lying on my arm as I slept because as I pick it up my fingers are numb and it takes me three attempts to press the answer button. I don’t need to look at the phone’s face to see who it is or the clock to check the time. It is between 1.30am and 3.00am in San Francisco, and my wife – in London – is ringing me to tell me the results of the test to see if the baby she is carrying does or does not have Down’s syndrome.

There is no grey area with this test so I don’t need to be fully awake to take in what she says to me. The test is conclusive. Despite the one in seventy six chance against it, there is no doubt that our baby has Down’s.

We talk for a while about how we are to react, but it is too soon to take it all in, and we are avoiding the issue – partly out of fear and partly out of practicality. I will be home in less than 24 hours, and this isn’t a conversation to be had over the phone, let alone when we are thousands of miles and several time zones apart. My wife says she will call my family and tell them the result, and I feel guilty for being so far away from home and so sad that we have such difficult conversations and such difficult decisions ahead of us.

We try to console each other; to assure each other that we will be honest and open about our feelings and our thoughts and our fears, and that we above all we will stick together.

It’s not the end of the world, we know that. We have been aware for two weeks that it was possible our baby had Down’s syndrome – ever since the routine scan suggested the nuchal fold was bigger than expected. We’ve been for a further scan to measure it accurately and compare with the hormones in my wife’s blood.

The results were all statistics and percentages: a one in 11 chance based on the nuchal fold; one in 4,000 based on the blood; one in 76 in total, compared to one in 300 on average for my wife’s age; a 95% accuracy rate for the combined test, compared to 85% for just the nuchal fold measurement; a one in 100 chance that the next test could result in a miscarriage. You could drive yourself mad just thinking about it.

At least now we know and we can get on with dealing with the reality, although the immediate effect of that is bewildering. Thoughts race through my mind. Is it fair to bring a child that you know will have learning difficulties into the world? Is the alternative even conscionable? Is that a word? Is it selfish to even consider a termination, or selfish to dismiss it out of hand? The overwhelming feeling is that it is important to do the right thing. I just have no idea what that is.

The tears come quickly after the conversation ends and we hang up, but I don’t really know what I am crying about. Mostly I’m just sad for our baby, and guilty about how quickly my mind turns to the possibility of termination.

Where before it was an abstract theory, and one that was almost impossible to consider, now we are faced with matters of fact, and it is a very real alternative.

And the truth is that I just cannot picture the other option. Whereas before we knew the result I had a deep belief that I would be capable and willing to make the sacrifices required to bring up a child with additional needs, now I just cannot see it happening. Unlike the fantasy, I cannot imagine what reality.

I turn my phone off. It’s not entirely selfish, I expect my family to send texts, if not call, but I’ve not been sleeping well on this trip, and I know I need to sleep while I can.

The tears soon pass and slowly my doubts and thoughts fade as sleep returns. The last thing I remember, a song lyric* enters my head; one that I had been listening to earlier that day.

“I blow you a kiss,
It should reach you tomorrow,
It flies from,
The other side of the world.”

I wake up at 5.30am in San Francisco and immediately turn my phone on. There are texts from my sisters expressing their love and two – three? – missed calls from my wife. I call her back immediately and once again we talk without addressing the real issue at hand. I will be flying home later today and it will have to wait until then.

There are more tears, this time as the reality of the situation really sinks in without the fog of sleepiness. They are mostly for our baby, for the fact that it might be suffering, but I can’t help feeling sorry for us too.

My wife’s sister says we will need to grieve for the baby we thought we were going to have, which makes sense to me, although there is also the fact that we are having the baby we were always going to have. All that has changed is that we now know for sure that our baby has a chromosome defect.

We will make an appointment to see a counselor at the hospital as soon as possible to discuss the implications. I turn my laptop on to start looking up information on Down’s syndrome.

Almost immediately I give up. There is too much information, and it is too soon. I cannot take it in. I am too emotional. I take out my frustration on the running machine in the hotel gym and am forced to get back to reality; I am due in my company’s San Francisco office for a meeting, and a few more hours work, before I fly home to London.

I try to act as if nothing is different, but it is hard work. My head hurts and my eyes ache from crying. I cannot concentrate on what I am doing. I just want to get home and see my wife and our little boy, J. Our new baby’s big brother. My wife has emailed me some information about Down’s syndrome but I am unable to read it without crying.

Despite all the doubts and confusion I am filled with love for my family and a resolve and belief that whatever happens from here, whichever way our thoughts take us, we will be strong enough to get through it together.

“Give me strength.
Give me wings.

I blow you a kiss,
It should reach you tomorrow,
It flies from,
The other side of the world.”

Week one
The great thing about having a child in your life is that it forces you to live in the present and not dwell on the past or the future. While my wife and I spend much of the few days after my return from the States talking about the impact of the news, we are also too busy looking after J to get too dragged down into melancholia. That said; there is tension in the air, and overall feeling of helplessness.

As soon as we are able to, we talk openly about our feelings on the news, having promised each other that we will both be completely honest and not hold anything said against each other. The one good thing about me being half way around the world when we got the news is that we were able to take it in on our own terms and are now able to sit down and talk calmly about our feelings and how we reacted in the first 24 hours or so. It is a cathartic experience to explain the series of emotions that we have been through.

Fortunately we find ourselves in agreement about most things. We have felt the same feelings and thought the same thoughts – even those that we would rather not admit to, and can take comfort in the fact that we are in this together. Unfortunately we cannot agree on how event should now unfold, which isn’t to say we are in disagreement, but that we both just do not know what to do for the best. Our families are both supportive and loving, which is an incredibly strengthening feeling. God knows what we would do if we had a family members trying to persuade us to decide one way or the other. It would be hell.

We go to the hospital to see the counselor – the same one we saw when the combined test confirmed that there was a one in 76 chance or baby has Down’s syndrome. She talks us through our options and a few more statistics, but we don’t get what we were looking or, which is an indication of what we should do next. The reality is beginning to dawn that we are on our own as far as that is concerned. As much as family and friends would like to help, the decision is down to us.

We absorb information from the Internet about the potential impact and effects and what life might be like, but eventually it just becomes more words and pictures on top of more words and pictures, none of which helps to actually make a decision. I try to avoid information that is too “pro-life” – not because I don’t want to consider that point of view, but because the decision we come to should be made for the right reasons, not guilt.

Given the increased risk of miscarriage – about 45%, there is only one decision that could produce a definitive outcome. Choosing to continue with the pregnancy is no guarantee that the baby will be born. That is one of a number of factors, along with the grieving process for the baby we thought we were having, and the inability to imagine life with a baby with Down’s syndrome, that make termination the almost inevitable option, for a time at least.

There is little pressure from elsewhere for us to make a decision, and the visit to the counselor confirmed that we have a number of weeks before the medical options are limited, but for the first few days the pressure we are placing ourselves under to make a decision mounts until it is almost unbearable. Given that termination is the only decision that will result in a definitive outcome and place us back in control of the situation, it begins to become almost the default option, even though it is not the decision that either of us want to take.

There are so many factors to take into account, not least the quality of life for our baby and the impact on J. The fact that most of the factors are unknown – what will the level of learning difficulties be? What might the physical impact be? – makes it almost impossible to come to a conclusion. There is the possibility that one of us would have to give up work, but that would result in us needing to move house. How can we plan for that and all other potential eventualities without knowing what will or will not be necessary?

Somehow the momentum of all this doubt confusion sends us hurtling in one direction until eventually the pressure gets too much and we stand face to face with a decision to terminate.

It is not a decision we can take however. We both agree that Down’s syndrome, in and of itself, is not enough to justify abortion. With the potential that a 16-week scan might provide us with more information on any physical effects, we decide to wait and see what that scan might tell us before we com to any decision.

Almost immediately the pressure is lifted and we begin to think more positively about the future. One fact that has been floating around our thoughts is that there are so many disabilities or issues that you cannot test the fetus for – such as autism or Asperger’s syndrome, or hearing or sight problems. This is true of all babies. How would we have felt if our first child had been born with one of these issues? Shocked and saddened, of course, but ultimately we would have just got on with it. Should Down’s syndrome be any different?

It seems to me that the medical profession tests for Down’s syndrome because it can test for Down’s syndrome, without much thought about what that actually means should the test prove positive. There are many physical and mental issues much worse that are not testing for. Why should Down’s syndrome be discriminated against?

Part of me wishes we just did not know. While on the one hand you can potentially prepare for the new baby with knowledge at you disposal, on the other hand you are faced with the decision about whether your child should live or not. I don’t think that’s a decision that any one should have to make.

My wife spends the first week working from home. She doesn’t want to go into the office and have more people than is necessary knowing that she is pregnant. It’s not the close colleagues that are the problem. It’s all the other people you pass in the corridor. It’s no business of theirs whether she’s pregnant or not. I haven’t told my employers or colleagues about the pregnancy and have decided not to do so until we know what we are doing. That in itself is sad, the situation being so different compared to what we were expecting – the usual announcements followed by congratulations and handshakes and backslaps.

All that can come, of course, but for now it feels as if life – the life of our baby – is on hold, at least until that 16 week scan and more information about the potential physical effects.

In the meantime, we try to get on with life as usual, and with the pressure gone it gets easier. We begin to imagine life with our new baby again. It’s an exciting and daunting and frightening prospect – but isn’t having any baby?

Week three
In other circumstances I think if someone told use there was a possibility that our baby had a hole in its heart we would have panicked. As it is, we have taken the news in our stride.

Perhaps it is the fact that the cardiologist laid out all the potential heart problems, from the worst to the best case scenario, before telling us that our baby is probably at the best-case end of the spectrum.

Perhaps it is the fact that she couldn’t see for sure if there is a hole (although there definitely is a leaking valve) and we’ll have to go back in four weeks for confirmation. Perhaps we had prepared ourselves for the worst.

Either way it just feels like the first of a number of related health issues that we will probably have to deal with and it is actually some relief to know the situation isn’t worse. It goes to show how quickly you adapt to changing circumstances that I found myself telling my family “the good news is the baby might possibly have a small hole in its heart, but other than that it’s working fine.”

A big part of how happy we are with the situation is how helpful the staff at the fetal care unit have been. They have told us that they will be with us throughout the pregnancy and beyond and that we will go to them for all the necessary scans and tests. It does feel slightly strange walking past the pre-natal unit to get there, but we are relieved that we will be getting good care and will not need to inform new members of staff about our situation.

What I think we both want to avoid is being treated like people have an “abnormal” baby, and the staff at the fetal care unit have been very good so far in treating us like people having a baby that needs additional attention.

As we waited to see the cardiologist another couple were also in the waiting room. Given the looks on their faces I can only imagine they were waiting to see a counselor having recently received some bad news. They both looked totally drained and lost. It was heartbreaking to see them and strange to think that a couple of weeks ago we were sat in those same seats with probably not dissimilar looks on our faces. Now we were calm and happy, albeit apprehensive. I can only hope that couple can be able to feel the same way that we now do about whatever situation they face.

Having had the heart scan my wife has now returned to work. While several of her colleagues already knew she was pregnant, (she is showing already) she has now told everybody and is beginning to tell them about the Down’s syndrome as well.

That is something that I am finding more difficult.

In part this is because I hadn’t told many friends or colleagues about the pregnancy before we found out about the test results and decided not to tell them anything until we knew which way we were going. The result is that I am only just now telling people that we are expecting, and given the usual responses of congratulations it seems wrong somehow to tell them about the Down’s syndrome. After all, there is reason for congratulations, and no reason for them to know just yet. I will tell people in time.

I must admit, however, to also having some issue with actually finding the right way to say the words. This is in part due to the fact that I have only actually told one person. As I was in San Francisco when we found out my wife told all our immediate family. Perhaps I should get some practice in.

It probably doesn’t help, to be honest that I am currently writing this and keeping it on my desktop rather than sharing it with anyone. I have been thinking about ways in which I could share this with the outside world and communicate with people who find themselves in a similar position to us. I think I would have found reading something like this helpful in recent weeks, in terms of feeling that we were not alone, and it was okay to have serious doubts about the right decision to make. There is some great information out there on the Internet, but it does feel all the time like you’re reading the thoughts of an organisation, rather than an individual.

Of course one of the things we have not done yet is reach out to those organisations and get in touch with people who have children with Down’s syndrome. It is definitely something we will need to do and something we now want to do.

Week 13
It is a testament to how quickly you come to terms with something like this that I haven’t thought about writing here for ten weeks or so. In that time we’ve had two scans, the first of which confirmed that there are no additional physical issues with our baby and, while there maybe a small hole in its heart, it is certainly not big enough to cause concern. It was fantastic to visit the hospital and for once come out with better news than when we went in.

Even better was to follow at out most recent visit when we had the opportunity to see a 3D scan of our baby’s face, which was one of the most amazing experiences of my life.

Until now it has been difficult to think of baby outside the context of Down’s syndrome and it is easy to forget that it is a baby first and has Down’s second. Seeing the 3D image of its face on the screen suddenly changed all that. Our baby looks so much like J and my wife and the feelings of love and relief hit us both in a huge wave. We couldn’t stop smiling for hours. It was so nice to finally feel the excitement we were denied at our first scan when the operator raised the matter of the size of the nuchal fold.

How big a change this has had on my thinking was revealed a week or so ago when I was at the theatre with my god daughter. A man with Down’s syndrome was sat across the aisle from us a couple of rows in front and while (as usual these days) I paid him more attention than I previously would have done, I suddenly realized I was not thinking what I have done every time I’ve seen someone with Down’s syndrome since we got the news: “That’s what our baby will be like”.

Seeing our baby’s face and feeling the connection has been incredibly liberating, while the fact that the baby is starting to kick has also driven home the realisation that it is, after all, a human being first and foremost, and has Down’s syndrome second. Also it was confirmed that while our baby is small, as is to be expected for babies with Down’s syndrome, it is growing at the right pace.

Another breakthrough – I have eventually started to talk to people about our baby having Down’s syndrome. In fact I did so no longer after my last update as I spoke to some friends about it, and have also told some of my work colleagues so that they will understand why I’m going to the hospital for so many scans and why I am eager to avoid any foreign travel after the baby is born.

The response has been helpful, but another sign of improvement in my attitude since the 3D scan is that I don’t care too much about people’s responses any more: it is what it is, and whatever happens we’ll deal with it.

Week 14
My wife had a dream earlier this week that our baby had grown up and become a teacher for children with learning disabilities. It was just a dream but I think it is symbolic of the difficulty of coming to terms with expecting a baby with Down’s. I find myself day dreaming about how slight the mental or physical effects might be, or even – I must admit – that the results turn out to have been false positive. It’s denial. On the other hand I think it is understandable given we don’t know what the effects will be, and its better than focusing on all the things our baby might not be able to do.

One of the things I’ve found saddest about knowing you baby has down’s is the lowering of expectations. Right now the opportunities for J are enormous. He could do anything – sportsman, academic, musician, entrepreneur, artist… Of course as he gets older the opportunities will narrow as we learn what he is capable of and where his talent lies. That is true of any child. It just feels wrong that the opportunities for our second child have already begun to narrow before it is born. Then again I’m sure, as is the case with J, that we will be constantly amazed by what our baby can do.

Week 21
I was back in San Francisco with work two weeks ago (I traveled via Chicago, Illinois as it happens) and couldn’t help being reminded of the last time I was there, being woken with the news that our baby has Down’s syndrome. How far we’ve come since then… It still takes some getting used to – every now and then I remember that we are about to have a child with Down’s syndrome and it hits me like a punch in the stomach.

It’s just the fear of the unknown however, and for the most part now we just can’t wait to meet our baby and get on with whatever challenges life will throw at us.

We had a hint of the potential challenges last week as the latest scan showed a small amount of liquid in the baby’s tummy, which could be indicative of a problem with the lymph glands related to the bowel or kidney or stomach.

It’s not a big deal – it may be absorbed by the time of our next scan, or it could involve some further investigation. We’ll have to wait and see. The news was hard to take for my wife, who had been concerned that there was a problem, and was a reminder that rather than big problems, we are more likely to face a series of small problems.

The good news is they are happy with the rate of growth of the baby, and assuming that growth continues there is no foreseeable reason why we should not go ahead with a natural birth.

The consultant did say that at the next scan, in four weeks, if for some reason the baby does not maintain its growth then they would rather deliver by caesarian sooner rather than later than leave the baby any longer, which has come as something of a wake-up call that our baby could be here as soon as in four weeks.

We still have all the last-minute baby things to do such as getting the nursery decorated and making sure we have all necessary supplies. Then there is the matter of getting J to agree to give up his cot and start sleeping in a single bed. Another one of life’s small challenges…

Week 25
It was hardly the best preparation for the arrival of a new child: my wife and I both woke up on Tuesday last week to find that we had been wiped out by a mystery stomach bug. Fortunately the baby appeared to be fine, though, and at least it meant we got plenty of sleep before the events that were to follow.

On Wednesday my wife discovered that she was bleeding slightly. Not enough to cause alarm – but enough to warrant a trip to the hospital for a check-up. J was deposited with his Aunt and we made our way over there to see what they had to say.

It quickly became obvious that they weren’t going to take any chances and while there was no emergency, they would prefer to deliver the bay than caeserian sooner rather than later. While we had wanted to go for a natural birth on this occasion, the most important consideration was the safety of our baby.

However it had also become obvious that the stomach cramps/Braxton Hicks my wife was suffering was in fact early labour, so we had a little wait to see of the baby was going to make its own way into the world. I rang the family with the surprise news: one way or another this baby was going to be about two weeks early.

We suddenly panicked about our lack of decision for a name for our baby. Girls names we were fine on, but I have a dislike of almost all boys names that makes choosing a boy’s name almost impossible: it took five days to name J. Suddenly I began paying more attention to the names of the doctors and nurses and scoured the paper for inspiration.

Before we could reach a decision it was eventually our turn to go into surgery. My wife’s labour had not proceeded quickly, and with the increased risk of miscarriage for babies with Down’s syndrome and no indication of what was causing my wife’s bleeding, it was the most sensible decision.

The operating room hadn’t changed much since the last time we were there 28 months ago for the birth of J. At first it was comforting to know our children would be born in the same room. In hindsight though, I would have preferred to have been in another room. There were too many differences in the procedures that were highlighted by the fact that I expected things to be the same.

When J was born the delivery had been quick, but this time it took the doctors a long time to take their preparations. They explained to us that they were talking their time and being extra careful due to the previous caesarian, but I couldn’t help feeling a little uneasy.

When J was born they had held him up so we could photograph his entry into the world. While the nurse told me to get ready with the camera, they laid our second son down on my wife’s chest. I could have taken a photo but he had his legs splayed open in front of us, and from the angle I had I couldn’t properly see his face. It wouldn’t be the sort of photo Boots like to process these days.

When J was born I had been called over to see him weighed and measured and then he had been wrapped up and but into my arms. This time no invite came, so I made my own way over to see him. The good news is our boy looked beautiful and, to my eye at least, healthy and strong. I watched the medical staff do their jobs and couldn’t help wondering whether the different attitude had something to do with the Down’s syndrome.

It would appear I was partially right. “Is he okay?” I asked. “Yes. Do you know the results of your X test?” asked the paediatrician (I still don’t know what he asked me exactly). I replied no. “I’ll be along to talk to you both soon,” he said.

“We know he has Down’s syndrome,” I replied, assuming (and hoping) that was what he was referring to.

“And what do you understand by that?” He asked.

I was a little taken aback by the question. “It means he has an extra chromosome,” I replied.

Perhaps the paediatrician was surprised by the clinical nature of my response. He continued to look at me askance. “We’ve known since March,” I added. That appeared to satisfy him and there was just time for me to be patronised “They are very happy babies”) before I was soon able to take our second son over to see his mother, who was busy being patched back together.

She instantly fell in love with him as he was placed in her arms. And who can blame her. In all the goings on I had been distracted from the most important thing – our healthy baby boy. He looked just like J did when he was born, and like him quickly opened his eyes to check his parents out despite the bright lights of the operating room.

He was also clearly hungry and was soon breastfeeding after we were taken through to the post-delivery suite. It was a great relief for us, especially my wife who had been concerned about our baby’s ability to feed naturally. We were also similarly relieved that he didn’t have any of the floppiness associated with Down’s syndrome.

While it is only natural that we were mindful of the potential effects of DS it is a shame that these overshadowed his arrival. In hindsight I was too busy looking for the effects to simply accept him for who he was.

That changed over the next couple of days, however – helped by the fact that he was given a clean bill of health and within a few days and my wife on the way to recovery we were able to take him home. His big brother is just as in love with him as we are, making me third in line for a cuddle most of the time.

What has been interesting about the few days since we got home is just how quickly the fact that our baby has Down’s syndrome has become irrelevant. While it occupied my mind for the first few hours, the birth of our son has confirmed what we had hoped we would feel – that he is a baby first and has Down’s syndrome second. While the syndrome was a defining characteristic before he was born, and will no doubt be a significant issue in the future, right now it just doesn’t seem relevant.

My feelings about the patronising description of babies with Down’s syndrome as “special” have also been confirmed. Our son is no more special than any other baby (especially his big brother). He is, after all, just a baby. That might sound callous but anyone who has spent months worrying about the health of their unborn child will understand what pleasure and relief it gives my to write that sentence.

As for a name – we got there pretty quickly this time (less than five days anyway). He’s remaining anonymous for now, but will be known on here as G.

You can follow updates on the progress of both G and the rest of the family with posts under the personal category.

*”Fugitive Motel” by Elbow, from the album “Cast of Thousands”. Lyrics are the property and copyright of their owners.

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