A world without my beautiful little boy?

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We were really keen to not have too much of an age gap between Number One (Sophie) and a second. She seemed to take forever to be conceived and I was worried it may take a similar time frame again for the second (we weren’t getting any younger!). I was in absolute disbelief (in a good way) when Number Two was ready to go after just a few months of trying!

The day after the 14 week scan, which fell on a Thursday, we received a phone call from the Princess Anne Hospital, Southampton, saying that our scan had presented – and I forget the exact wording here – a 1-in-3 chance of the baby having Down’s syndrome. Apparently the sonographer had also seen something that didn’t look quite right with the chin – which in itself didn’t worry her, but with the nuchal translucency neck fold and Liz’s blood results; they felt that it deserved a phone call on a Friday afternoon. The link midwife (for diagnoses of chromosomal abnormalities and the like) wanted to invite us for a scan with fetal medicine on the Monday morning; hence the phone call late on a Friday. We had a brief phone conversation and she was both extremely helpful and informative. She ran through some of our options, which included us doing nothing, but we decided that we should take advantage of being able to see Mr Howe (consultant) in fetal medicine. The scan showed up some cystic hygromas – something that is symptomatic of chromosomal ‘abnormalities’, with this and the other markers, it presented a potential of various aberrations (if you will), not just Down’s syndrome. Both the link midwife and Mr Howe then spent time talking through various options with us – one of these was termination, but it was put forward as an option and, in my mind anyway, not something that was pushed onto us in anyway shape or form. The Non-Invasive Prenatal Screening Test (NIPT) seemed like a really sensible test to take – there was no risk of miscarriage at all and, whatever the result, it would give us perspective, along with a chance to prepare both mentally and physically. I even starting teaching Sophie makaton in preparation of her potentially being able to communicate with her younger brother more easily! So blood was taken there and then and we would have the results back by the end of the week.

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I think we had prepared for a positive test already – we didn’t speak about it overly much that week but everything seemed calm between us and we were still very happy that Number Two was on its way. We had already asked the hospital to phone us as soon as they had the results back and this is what she did on the Thursday (a very quick turnaround I thought) – the test was positive. She spoke to us for a while on the phone, told us what will happen from now on, reassured us that we would have the same midwife throughout the pregnancy and made it clear she was there should we need anything. In fact the community midwife phoned the very next day and paid us weekly visits up until two weeks after the birth. She was absolutely amazing and would often fit us in as extra after a very hectic day. The news certainly didn’t come as a shock to me, and I think Liz handled it extremely well also. I have volunteered and worked with both children and adults with physical and learning disabilities most of adult life and I felt almost blessed and lucky that I was going to be around such humbling company. Company which doesn’t discriminate, judge, give to receive and who can love unconditionally.

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So from that point on we felt in the safest possible hands. There are so many things that I didn’t know about Down’s syndrome – more so the physical side of things – and I think that the hospital were very clever and sensitive about how much, and when, information was delivered to us. We had scans at week 20, 28, 34 and 38 –, and each time they spent up to two hours with us, bringing over a cardiac pediatrician for a second opinion on the heart to identify any potential congenital defects and de-briefing us at the end of each scan. It didn’t seem that they were just doing their job, just fulfilling the Hippocratic oath that they had signed, it seemed as though they really cared and wanted to see the best for us and the forming life; no matter how many chromosomes he had! At the 38-week scan we formulated a plan of being induced at week 39 if nothing had happened before…

We were due in on the Thursday for induction; something I have been told is rather unpleasant for the women involved. Luckily no-one had given baby that memo and labour started in the early hours of Wednesday morning. Sophie was out within four hours from start to finish so we were told that we needed to get into hospital pretty sharpish once the contractions started with Number Two. I phoned the labour-line and they couldn’t have been more helpful – again making us feel that we are in incredibly safe hands. They were expecting (see what I did there) us when we arrived and we were quickly, but calmly, taken to our room. Liz was hooked up to a wireless monitor to check the baby’s heart rate but other than that everything else was like the first time. Jack Denis Miller was born at 7.32am on that morning at the amazing Princess Anne Hospital in Southampton. We were over the moon at a safe and uneventful delivery of our precious little boy.

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For the following two days in hospital we received, what I believed to be, the best possible care. We were given our own room – something that the midwives arranged for us during the birth –, which obviously helped loads. Jack had his heart scan on the first day – we weren’t expecting anything serious as the fetal scans had only showed a potential ventricular septum defect – but still a worry nonetheless. A midwife went with me downstairs to the neonatal ward and made sure that Jack’s every need was catered for. She didn’t stop stroking his face, talking to him and making sure he was comfortable. The bed was at a really awkward angle and, although clearly in an uncomfortable position (I know I was), she didn’t stop holding him. The second thing that bowled me over was when the pediatrician came in the room to tell us the results of the scan – he came bounding in the room clapping has hands together telling us of the good news (completely clear). He was clearly genuinely happy for us.

I managed to watch Sally Phillip’s documentary – ‘A World Without Down’s Syndrome’ – on the Thursday night (I wasn’t allowed to stay on the ward). It was probably best I watched it on my own, as it was heartfelt, emotional, visceral and so soon after the birth! There were many issues in the documentary that I found extremely abhorrent, challenging and, if I am truthful, I basically just didn’t understand. I truly believe that education is the way forward with so many things in life. To take such a backward step and operate basic eugenics seems to be so primitive – maybe people don’t realise the positive impact someone with learning disabilities will have on their (and indeed the world’s) life. If we keep looking for ways to not help other people then I worry what will become of this world we live in.

I found it tough to listen to what medical staff at various hospitals had said to women who had received a diagnosis of Down’s syndrome. Our experience had been a really positive one and I really hoped that this was the norm, however I am not that naive to actually believe this. I – and I know all of you reading this – will live in hope that the NIPT can lead to parents making informed choices, without prejudice or pressure, and in such a way that all the many positives of Down’s syndrome can be told. I know for one I don’t want to live in a world without Down’s syndrome, it would mean being without my beautiful little boy. I am excited to see what the world will bring for him and what he can bring to the world.

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1 comment

  1. Kelly sherwood   •  

    So glad this lovely family had the amazing support we all deserve.
    My midwife handed me my daughter, post birth diagnosis, sobbing.
    Not the best start but she is my world, enjoy yr lilttle boy,

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