Actually, people say he’s gorgeous

It’s May 2016. I get a call from the Health Visitor out of the blue, asking to meet us. She’s a new one (to us). She texted me a few months back, but never followed up or came out to see us. The last HV we’ve seen was back in the newborn days, who signed us off once it was clear that breastfeeding was going well.

I’ve had some concerns about B. He rolled over early, but now at 10m+ he’s not able to do many of the things I’d expect him to (he’s not able to sit without support, not able to crawl, needs to be spoon-fed, and the food needs to be puree…I’m a baby-led weaning inclined, so I don’t say ‘need’ without cause, he needs that help), so when the new HV asks if she can come now, today, unusually (for me) I say yes.

She comes in a bit breathless. In retrospect, I suspect she’s trying to catch up from mistakenly *not* coming to see us previously. He’s sleeping, but her coming in wakes him. I pick him up to introduce them, and the first words from her are: “Do people often tell you he looks like he has Down’s Syndrome?”

I just look at her, because the answer, of course, is no, no one has ever said any such thing to me. Not the midwife who saw him postnatally. Not our previous Health Visitor. Not the GP who saw him for his 8 week check. Certainly not random people off the street, or people we know.

Mostly what they say to me is, “Isn’t he gorgeous?”

And it’s true. This child is called ‘gorgeous’ so often it’s like another name for him. None of my other children have had this.  There’s a light in him, and such beauty in his eyes. In the days that follow, as I start to process this encounter, it’s something I’ll watch for and hold to – the people who keep coming up to us and calling him ‘gorgeous’.

I can’t say, however, that some wondering hasn’t crossed my mind, with the developmental delays and sometimes a particular look about him. He was quite floppy as a newborn, for longer than I might have expected, but he breastfed successfully, even with a noticeable tongue-tie. He rolled over early. It’s only been after that things started to not match up with expectation.  But life is hectic here, nursery isn’t concerned, and I’m aware that every child is different.

I’m not sure how I reply. I think I mention the developmental delays.  She then takes an opposite tack, minimising. She tells me that maybe my child will suddenly ‘catch up’ developmentally, and that we’ll meet again in a few weeks, and maybe there’s nothing to be concerned about. I’m not sure why this seems an adequate way forward to her; later she tells me it had to do with ‘gaining my trust’. (Not the right approach with me, that’s for certain. I’d far more appreciate a referral for a blood test and some support for my child’s apparent developmental delay.)

She leaves, and it’s only then that I really start processing what’s she’s said, and that B and I can’t wait a few weeks, we need help now. I start browsing the internet. I finally see what babies with DS look like. They look like my baby. I try calling her a few times, but no answer, no call back.

So I end up having to book a regular appointment with the GP. We wait a week before we can get an appointment to see someone. I’m not sure why this is, as usually they are much quicker. When we do get to see someone, he’s quite sympathetic and matter-of-fact, stating that you can’t really tell by looking, but yes, given the developmental delays B should be referred on to the paediatrician.

We end up getting an appointment for mid-July. That’s about 5 weeks in the future, but what can we do? I don’t know if there’s anyway to get genetic testing privately, but what difference would it make? There’s not a whole lot to do but wait. (In the end, the timing is perfect as I’m fortunate enough to pull off getting to Orlando for the first MuTu Pro training (thanks, Mom!), and sadly as soon as I’m back, I’m off again to California following my father’s death.)

In the time when we’re at home, the Health Visitor does pop round and refer us for a visit with a physiotherapist. Unfortunately, the physio who visits us prior to diagnosis is simply insulting. She looks at my little one and manipulates him a bit – including making him stand without adequate support in a way that clearly alarms him, but too quick for me to intervene –  then declares that while he may have some ‘mild’ issues, possibly a touch of hypermobility (he’s actually massively hypermobile), the children that she deals with are far worse and there’s nothing really she can do for him. I mention the suspicion of DS and she says she doesn’t think he has it. “Well maybe mosaic DS?” Her face twists and she tells me ‘Absolutely not. That’s the one where they have exaggerated mongloid features and real problems.’ I’m so shocked by this that I don’t say anything, even to correct her. I just feel sick at her response and see her out quickly. I am thankful we’re not likely to see her again.

In the run up to the appointment with the paediatrician, we see the HV again. I try to stay friendly as I know she intends to be an advocate for us. She asks me to come to clinic to have him weighed. It turns out he’s off the bottom of the charts for a ‘normal’ baby. She’s clearly panicking a bit at this, and tries to pin it on me not feeding my child adequately.

I’m not so happy myself (though I know he’s eating well and it’s not that), but I have a niggling suspicion that Down’s Syndrome growth patterns may be different.

When I get home and Google I see that there is indeed a separate chart for babies with DS. My little one is just under the 50th centile on it (pretty much where he is today). I leave her a phone message about this. I’m not sure it makes any difference. We don’t see or hear from her again after this point, but I’m not particularly bothered as it’s clear we are a bit beyond her normal scope of practice.

We (B, my 13yo daughter and I) go into the appointment with the paediatrician unsure what to expect. Thankfully, we need not have worried. He’s incredibly courteous, well-informed, and takes the time to talk through the situation with us. He explains that you really can’t tell about DS just by looking, the tests that will be done, and how long it will take to get the results (several weeks). Bloods are taken and sent off. Again we wait.

I manage to catch up with him by phone in August. He confirms B has DS, not mosaic DS but the full version. We make an appointment for September to discuss further. We’re referred for a heart check, but are pretty certain there won’t be any problems.

It turns out we’re wrong about that, (he has Atrial Septal Defect), but by this point I can say that every professional we deal with going forward is kind, reassuring, and genuinely helpful. It takes a little time for referrals to come through, and November to January in particular were intense averaging 3 appointments weekly as we caught up.

Now, in March 2017, things are settling into a new normal. He’s got great support from Portage, as well as from the NHS (including a physio who sees him weekly, not the one from before!).  The Down’s Syndrome Association and Down’s Syndrome Northeast have been great points of reference for us.

I’m not sure I’ve fully processed what it means yet to have a child with Down’s Syndrome – quite frankly I’m too busy looking after ordinary life to give space to letting this settle fully in the way that I’d like to – but what I do know is that we all of us here love him so incredibly deeply, and we would be lost without him. He’s not ‘less’ to me than my other children in any respect. He is beautiful and whole, and exactly who he is meant to be. He enriches our lives, and has transformed me and helped me to grow as a parent in ways I never could have predicted. I am definitely a much better person and a much better mother thanks to him.

So, do many people tell me he looks like he’s got Down’s Syndrome? No. Not one person has ever said this to me, apart from that Health Visitor. Often I wonder if they have any idea, or if I should mention it, when people remark on how tiny he is (he’s only 20lbs now and sometimes the DS is obvious, sometimes it’s not), but mostly what I still hear is just the same as before.

People look at him, they see his smile, and they say, “He’s gorgeous!”