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A World Without My Beautiful Little Boy With Down Syndrome?

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We did not want to have too much of an age gap between our oldest daughter, Sophie, and a second child. It took a long time to conceive Sophie, and I was worried it would take just as long a second time around. Besides, we weren’t getting any younger. I was in absolute disbelief (in a good way) when we were expecting just a few months after 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 our scan had presented — and I forgot the exact wording here — a one in three chance of the baby having Down 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 the information 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 Monday morning; hence the phone call late on a Friday. We had a brief phone conversation and she was extremely helpful and informative. She ran through some of our options, which included us doing nothing, but we decided 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.” This, along with the other markers, presented a potential of various conditions, not just Down syndrome. Both the link midwife and Mr. Howe spent time talking through various options with us — one of these was termination, but it was put forward as an option only, and in my mind anyway, not something that was pushed onto us. The noninvasive prenatal screening test (NIPT) seemed like a really sensible test to take — there was no risk of miscarriage and whatever the result, it would give us perspective, along with a chance to prepare both mentally and physically. So blood was taken there and then, and we would have the results back by the end of the week. I even starting teaching Sophie mackaton in preparation of her potentially being able to communicate with her younger brother more easily.

I think we had prepared for a positive test already — we didn’t speak much about it that week, but everything seemed calm between us and we were still very happy that our second child was on its way. We had already asked the hospital to phone us as soon as they had the results back, and they called on Thursday (a very quick turnaround I thought) — the test was positive. The midwife spoke to us for a while on the phone, told us what would happen from then on, reassured us 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 after a 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 children and adults with physical and learning disabilities most of my adult life, and I felt blessed and lucky this would be our life. I felt I would be around company who doesn’t discriminate, judge, give to receive and who can love unconditionally.

So from that point on, we felt in the safest possible hands. There are so many things I didn’t know about Down syndrome — more so the physical side of things — and I think the hospital was clever and sensitive about how much, and when, information was delivered to us. We had scans at weeks 20, 28, 34 and 38. 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 debriefing us at the end of each scan. It didn’t seem 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  for our son, no matter how many chromosomes he has. At the 38-week scan, we formulated a plan of being induced at week 39 if nothing happened before.

We were due in on a Thursday for induction (something I’ve been told is rather unpleasant for a woman). Luckily no one had given baby that memo, and labor started in the early hours of Wednesday morning. Sophie was out within four hours from start to finish, so we were told we needed to get into hospital as soon as contractions started. I phoned the labor line and they were incredibly helpful — making us feel we were in safe hands. They were expecting us (see what I did there) when we arrived and took us quickly, but calmly, 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 around. Jack Denis Miller was born at 7:32 a.m. 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.

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 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 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 his hands together telling us of the good news (completely clear). He was genuinely happy for us.

I managed to watch Sally Phillip’s documentary, “A World Without Down’s Syndrome,” on 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 realize the positive impact someone with learning disabilities can have on other people’s lives. 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 said to women who had received a diagnosis of Down syndrome. Our experience had been a really positive one and I really hoped this was the norm, however, I am not that naive to actually believe it. I — and I hope many 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 positives of Down syndrome are made known. I know 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.

Follow this journey at Don’t Be Sorry

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Originally published: May 17, 2017
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