My youngest child of three having a diagnosis was almost expected, due to our ages (44 for me and hubby was 61), and also having had a high chance of DS in my pregnancy with my daughter, almost 12 years previously.
I was 33 when I was expecting my daughter, so was classed as ‘Geriatric’! I know, the nerve! I’d not wanted any screening but the midwife at the booking in session was insistent so I agreed. Along with bloods, my age and results of my 12 week scan, a midwife was dispatched the next day and I came home from work to find said midwife on my doorstep with the results of ‘risk’ of 1:156 chance of Down Syndrome. Elysia was born 6 months later and the midwife immediately announced, I see you’ve been checking, she doesn’t have DS. Naturally, there was a (very small) sigh of relief at that moment and it was never mentioned again.
Fast forward 11 years and we are pregnant again! It felt like deja vu by when once again, I was pressured to have screening and even though I explained that we’d been through this once before and it didn’t make one bit of difference, I felt bullied into screening again. I finally agreed, just so I could be free of the midwife. The booking in, as a geriatric mum, seemed to take forever and I just wanted rid by that time. Twelve week bloods and scan came and went but there was no midwife on my doorstep the next day so I felt relieved, or the day after that, or the week after that!It was almost 3 weeks later I had the phone call - a ‘risk’ of 1:5. I was offered further testing and again I declined. This time though, there was no all night discussions, we’d done all that before. Nothing had changed except that I was 11 years older so I didn’t even tell hubby - not that he’d worry, or even persuade me into testing or abortion, there was just no need for anyone to know until they had to!
Evan was born at 38+1. After a super speedy (for me) 2 hour 15 minutes delivery. He was born in the caul, he was so eager to get here, which is supposed to be lucky. Evan arrived like any other baby, bluish grey but soon perked up and had an apgar score of 9, just like his sisters. He was extremely floppy but I just put that down to him being tired due to his speedy birth. Then we were left alone, It was an hour before anyone came back. We’d washed and dressed him and he’d breast fed like a pro. Despite cuddling our newborn and some skin to skin kangaroo care, he was having trouble stabilizing his temp, so off he went to NICU to have a warm up.
Before being transferred to the ward without my baby, a nurse came into our room with a doctor following behind. He looked rather nervous and sheepish so I guessed what was to come, like I said before, it was almost expected. Now here’s the thing, he told me his suspicions, that Evan had a couple of markers but was also missing a few - he didn’t have a flat head at the back and neither did he have a single palmer crease. He did, however, have almond shaped eyes and sandal gap toes, a new one on me. He never once said ‘I’m sorry!’. He never once looked at us with pity, he never once listed the things that my son might never do and for that I thank him. We had a very positive experience, even down to a midwife sitting with me for more than an hour in the middle of the night so I wouldn’t be alone and scared, once my husband had gone home.
There were a couple of scary moments in those first two weeks in NICU and a few extra diagnoses to add to his T21 but we we were together and we were a family. Four years on would I change a thing, he’ll no!!! Life is better than before, you appreciate things more. You stop and you do take time to smell the roses, you have to. Each milestone reached is one hard fought for, both by you and your child and for those reasons you appreciate it and celebrate it more.
The absolute best piece of advice given to me was from a nurse who had twins, one of whom had DS. She said, ignore the DS for at least 3 months, bond with your child and treat him just as you would any other baby. Love and nurture him and do not google! There’s so much negativity online, it’s not what you need right now!
For World Down Syndrome day 2018 we were lucky enough to feature in an online video promoting positivity and awareness for our children and I are the last to be shown and I’m the mum who turns off the camera! This has been viewed over 230 MILLION times in the last 5 months and the response we’ve had has been overwhelming. Every single one of us 50 mums #wouldntchangeathing and we hope you won’t too.