May last year
was a very significant month for us. Not only were we half way through a big
renovation and extension project at our house, we were half way through our
first pregnancy. Add significant surgery for Colin into the mix and me being
right in the middle of our busy period at work, and life was quite stressful.
As I reflect on where we are a year on, I thought I’d write down all that we
experienced. It is intended to help me reflect and to explain to those of you who don’t know how we found out what
was going on with 'Twiglet'.
16 week scan
Our first '20 week scan', also known as the 'big scan' was on 3 May. We had
already had a private scan at 16 weeks (the weekend of our 4th wedding
anniversary) for two reasons. Firstly, our initial scan-to check the pregnancy
was ok and how many babies there were-was very brief. I think it lasted about
60-70 seconds, and I didn't actually see the heart beating - although the
midwife did. Both of us were keen to see little Twiglet some more and not feel
rushed. Secondly, I had been very ill for a few weeks around 12-14 weeks. Not
only was I being very sick and had lost weight, I got bronchitis and tore a
couple of intercostal muscles from the severe coughing fits. The doctors had put
me on an antibiotic as it lasted a couple of weeks without improving. I just
felt slightly nervous about this, and wanted some reassurance that Twiglet was
doing ok. The private scan was a lovely experience. We got to watch Twiglet
thrust its arms and legs about for 20 minutes. With my vast experience
of ante-natal scans and the benefit of hindsight, I can see that the scan didn’t go as
well as it might have. The NHS in Northern Ireland don’t carry out the testing
that is carried out elsewhere, e.g. blood tests giving you a ‘1 in X chance’ of
a baby with Down’s Syndrome (note I use the word chance, not ‘risk’, I’m sure I’ll
talk about the significant impact words like risk can have in relation to
ante-natal testing for Down’s Syndrome another time!) or the nuchal fold.
However, as this was a private scan, the nuchal fold was looked at. We hadn’t
specified we wanted or didn’t want this to be carried out, but I remember Colin
being slightly concerned that the sonographer pointed out the nuchal fold was a
little high. It measured 5.2mm at 16 weeks. There is no normal range at 16
weeks as there is not usually an ante-natal scan at this point in a pregnancy,
but anything above 6mm at 20 weeks is considered higher risk. She pointed this
out to us, and asked us to get the sonographer at our 20 week scan to check the
nuchal fold out, as it wouldn’t be checked in a normal NI NHS scan. I admit to
googling this when we got home, and did find some studies which suggested it
was a problem, but I also remember reassuring Colin that it would all be ok.
The ‘anomaly scan’
Roll on 3 May. I felt apprehensive that morning, like a
nagging feeling deep down that something might not be right. Colin was the
excited one, I remember him thinking we might get to see if Twiglet was a boy
or a girl – even though we were hoping to keep this a surprise. The scan was
after work, and again, with the benefit of hindsight, it did not go well at
all. In fact, the sonographer abandoned the scan. It’s funny how your brain
plays tricks with you. I’m not a particularly anxious person and tend to look
at the positives, so I didn’t pick up on the signals that all was not well. I
read the NHS booklet in advance which explained that sometimes the scan does
not show everything they need to check, so you may be called back. It's called
the anomaly scan because it checks for structural abnormalities (anomalies) in
the baby. It specifically mentioned that in a minority, but not insignificant
number of scans, you will be called back as they can’t see everything,
particularly the stomach if baby hasn’t swallowed any amniotic fluid recently.
So, when the sonographer couldn’t find a stomach, I wasn’t that concerned. Especially as she could see the bladder and I wrongly asssumed the stomach connected to the bladder (it doesn't) - in fact I voiced that out loud and she did not correct me, which was probably the wrong thing to do. She
spent a very long time looking at the lower part of Twiglet’s body. So long in
fact that I was clearly able to see that Twiglet was a boy, even though the Ulster Hospital
doesn’t tell you the baby’s gender. I remember lying there thinking, “That is
definitely a penis I’m looking at, isn’t it?”. After about half an hour of the
scan, the sonographer explained that she hadn’t been able to find a stomach,
but reassured us that this could be because baby hadn’t drunk anything
recently. She also said 9 times out of 10 when she calls people back, that
there’s nothing wrong, but she always liked to have someone else look. I don’t
remember her mentioning that the repeat scan wouldn’t be with a sonographer but
with the obstetric consultant. Colin then mentioned the private scan we had
highlighting the issue with the nuchal fold. At this point, again with
hindsight, she clearly was concerned, and she pulled the mouse over the nuchal
fold on the scan. The computer had been playing up a bit during the scan and
she clearly clicked on one side of the fold to take the measurement and pulled the mouse over
the fold. I saw the figure 6.5mm appear onscreen. She didn’t register it though
and tried again. She dropped the mouse again before the measurement registered
on the screen, but it was about 6.7mm. Looking back, she clearly realised
something was wrong, but she just said that the scanner was playing up and that
it would make sense to just measure the nuchal fold when we were back the next
week. We left the room, and there was barely anyone left in the maternity unit
as it was so late, maybe about 5.45pm. I needed the toilet but asked Colin if
he’d seen the baby’s gender. We did a 1, 2, 3, say the gender and both of us
said boy, so we were pretty certain we were right! We briefly got excited at
our little boy and as Colin waited outside the midwife’s room, I went to the
toilet. When I returned Colin had gone very quiet and I remember thinking, “Oh,
he’s disappointed with a boy”. The reality was, Colin had realised all was not
well, but knew I hadn’t picked this up, and he didn’t want to worry me. The
midwife then went over the top to be nice to us, again I can see this with
hindsight, she also realised something was wrong. I am rhesus negative (my
blood type means I would need probably need injections to ensure the baby and I
could co-exist) and the standard practice is to give the Anti-D injections
without checking the father’s blood type (if he is also rhesus negative there
is no need for the injections as baby will be negative too) as positive blood
types make up 85% of the population and it would be too costly to check each
father. There are also issues where the question of paternity could be
questioned. However, the midwife winked at Colin (yes, Colin, I’m sure she
fancied you!) and said she’d check his blood type even though it wasn’t
standard practice.
The 21 week scan –
repeat anomaly scan
On 10 May, we
returned to the Ulster Hospital for our repeat scan. Apart from family and a
few close friends we hadn’t made it public knowledge that the first scan had
thrown up problems. The scan was at 10am, so I was pleased I didn’t have to
spend all day at work worrying. I was surprised when it was a consultant who
came out to see me, and I thought “Oh, I was expecting another sonographer” and
also remember thinking there were a lot of people in the room. However, once
baby was up on screen again, I started talking to the consultant excitedly and
wasn’t worried about the scan. I have described to many people that I as I
reflect on those weeks that all the dots were there, and the doctors and
midwifes had clearly joined them up by this point. Colin had put a few together
and could see an outline picture. I meanwhile was aware of the dots, but
hadn’t seen any connection between them. The consultant momentarily thought he
saw a stomach, but he hadn’t. Colin went very quiet and I remember hearing the hushed
whispers of all the other people in the room – there was the deputy midwife for
the Ulster Hospital, another midwife, the consultant and another doctor but I
still didn’t realise the scan wasn’t going well! After another long scan, the
consultant got me to sit back down beside Colin and as he started to talk I
caught the eye of the midwife across the room and she, probably involuntarily,
tilted her head and gave me a sympathetic look. It was at that point I realised
that we were about to get ‘bad news’. Words like, ‘malformation’, ‘no stomach’,
‘soft markers for Down’s Syndrome’, ‘amniocentesis’ floated around in my head
as I tried not to start crying. At this point the consultant pointed out all
may still be ok, and I remember thinking, “Well Nicola, you better not be
dramatic and start crying as everything could be completely normal”. We left
the hospital knowing we had to make a decision about whether to have an
amniocentesis, mainly to confirm the diagnosis and help doctors with their
planning for Twiglet’s birth and treatment. I was also going to be transferred
to the Royal, and probably require a planned delivery, but this would depend on
the outcome of the tests and scans. The senior midwife followed us out and was
very understanding. As she walked off, we stood in the entrance to the Ulster
Maternity unit and cried. We made it to the car and cried some more. I texted
my boss (I couldn’t have spoken to anyone at this point) to say the scan hadn’t
gone well and I wouldn’t make it in to work. She said that was fine, so we
headed home to my parents where we were living as we did our extension. My poor dad had no idea how to deal with my tears, and
my mum popped round from work as we sat around the kitchen table and cried. I
can’t actually remember how we spent that day off work. I probably got icecream
from Mauds, and we phoned our elder Philip to ask him to mobilise the church in
prayer for our little baby. That led to some lovely texts, phonecalls and
emails from our family at Kirkpatrick and gave us both a boost. Anyway, by
evening, Colin and I were both able to step back a bit from the shock of the
morning, and had phoned the hospital to request the amnio. As much as anything,
we wanted to know for definite and ensure we and the doctors were prepared for
the road ahead. Looking back I can see how I didn’t feel a lot of the ‘grief’ emotions
people go through when they get bad news – denial, anger, bargaining,
depression and acceptance. I know people do react differently, but for us the
first day felt like the grief for the child we thought we were having, I’m not
sure I was in denial, I didn’t bargain and didn’t suffer any depression. The
next morning, I think I jumped straight to acceptance. God gave us both a great
deal of peace and happiness with the situation we found ourselves in and I am
sure this was the specific prayer of many of our friends. I admit to having
some moments of anger towards other mothers-to-be, but not friends expecting at
the same time, it was the pregnant woman smoking outside the maternity unit or
stinking of alcohol in the waiting room that I felt anger towards. Obviously I
have no idea how their babies turned out, but I did have those moments of, “I
eat organic food, I cook my food from scratch, I have kept fit throughout the
pregnancy, I took my multi-vitamins, and there they are abusing their bodies
and their babies will be perfectly healthy”. Anyway, I went back to work on the
Friday, and ended up working late as I found work to be a welcome distraction
from googling all the words the consultant had mentioned the day before.
Colin’s birthday - 21 May
Colin spent
his second birthday in a row in theatre having surgery for his Crohn’s. My
amnio was late on the next day, a Tuesday, and it was wonderful to have him out
of hospital in order to attend the procedure with me. It went fine, the consultant
(a different one this time) couldn’t find a stomach as consistent with previous
scans and they told us the Down’s result would be fasttracked as there were so
many soft markers - the high nuchal fold measurement, shorter limbs. Normally you have to pay for the quick turnaround of results. The
head midwife at the hospital dealt with us directly (and we didn’t need to wait
in the normal waiting areas, got a lovely little waiting room of our own!) and said she’d phone by the end of the week. By
this point I was pretty certain Twiglet had Down’s and just wanted confirmation
that it wasn’t some of the other chromosome disorders. The end of May is the
busiest time of year in my office so time off isn’t allowed and as luck would
have it, for my two days of bed rest, the weather was glorious. I felt very
guilty lying on the sofa with the French doors open onto the beautiful garden
filled with sun. It was fantastic though! I just relaxed, listened to music and
read those few days. Within 48 hours the hospital rang. I chickened out of
taking the call, so Colin did. I heard him say, “OK. Which chromosome?” so I
knew the test had come back ‘abnormal’, it was just a question of which chromosome
had the trisomy. He then said, “OK, so that’s Down’s Syndrome? Fine. Thank you
for letting us know”. We spent the next few hours phoning everyone who needed
to know and then putting the news on Facebook! We were determined to make sure
everyone knew we didn’t want to hear the words “I’m sorry” and that we were
also fine with the news. We knew God was in control of this little one’s life
and health. This was the day our families were ‘hit’ with the news, in the
sense I think most people thought everything would be ok, and got their shocks
once it was confirmed. Colin and I both knew from the consultants that they thought their suspicions were right. We actually asked the
consultant on the following Monday when we met with him if he knew, and he said he
was fairly certain baby had Down’s from his initial scan. On the Friday, I got
a surprise visit from my dog Bailey who was staying with friends, and Colin and
I went for a lovely walk in the park and prayed over our little baby and
chatted about the future.
A year on
When I look
back on everything that happened a year ago, I am still so surprised by the
amazing sense of peace and calm I felt. I am grateful that I was sheltered from
the worry in the build up to the consultant scan, and that we didn’t have to
wait long to find out what was happening. Obviously this changed the course of
the pregnancy; I was now ‘high risk’ and scanned almost weekly between the
start of May and start of September. I ended up admitted to hospital at the end
of August with complications, probably arising from Daniel having Down’s
Syndrome. However, despite all that, I wish I could tell myself back on 1 May
last year a couple of things. One, a lot of people will focus on the negatives in
life. These people suck your energy and leave you deflated. You don’t need
these people around. They will make it difficult for you to trust God to be in
control or to enjoy the good moments. I have learnt that I can choose to only spend
my time and energy where I feel recharged and energised. Two, Daniel will
change your life. Not in the negative sense people mean when you’re pregnant
(you’ll never have a lie-in again, babies take up all your time and money, your body will be
wrecked) but that Daniel will make you realise that life is a miracle, that everything we
learn to do as a baby is an amazing achievement, he will show you that
perservance and the right attitude get you far in life, and that expectations
people (particularly healthcare professionals) may have about him don’t have to
be what happens!
As a teenager at school, many of my friends chose to do
community service instead of sport on Wednesday afternoons. They headed off to
special schools to help disabled children while I played netball (or did ‘cross
country running’ – which I think involved a lot of time spent on the rugby First XV’s
sidelines....) I remember thinking that I hoped I never had a child with
special needs as I just didn’t know how people did it. How they could be so
selfless to care for a child with additional needs. How other people could see their
career spent working in this field. And here I am, about 13 years later, with
Daniel playing with his feet on the sofa beside me following an intensive
session with his physiotherapist. He has changed my views on disability and I
hope has made me a better person. I’ve realised that God has shown me
that He gives us the strength to face the things we think we couldn’t do. I
know others say this strength comes from within, but for me, it is definitely
God given.
Wow! I wasn’t
expecting that this blog entry would amount to 3,000 words! If you’ve made it
this far, thank you for reading.
