After diagnosis – Amber, The Trisomy 18 journey of 'my little fox'

7th September 2021

Ok big update for Amber I had my final scan today, feeling pretty sad about it as I’ve grown to love seeing her bumping around on screen and I feel like she is safe and happy where she is right now. Any problems she has aren’t an issue so much at the moment as she’s supported by my body so honestly I’m feeling terrified and tears are my constant companion at the moment as I’m trying to face what is to come.I have an induction date… Tuesday 14th September so only a few days to go and it’s all happening far too quickly now. I’ll be in hospital the evening before for assessment.I’ve opted for steroid injections to help support her lungs and breathing at birth as I’m only going to be 37 weeks when they induce… this pregnancy has been a balancing act of trying to make good choices that are hopefully best for Amber and myself. I’ve had to make some of the hardest decisions and I can only pray they give a happy result.. it has been coded a high risk birth and we still are uncertain and undecided on monitoring or if I should opt for a c section… something I want to avoid at all costs really, especially in case we have to transfer to Aberdeen hospital. (We are hoping Aberdeen may not have to happen.. Martin McCaffrey the US trisomy expert neonatologist called me last week and he believes that on the basis of Ambers scans we might be lucky and she may not have oesophageal atresia… no guarantees of course)The steroids I’ve discovered are pretty painful and I’m back to Raigmore again tomorrow for the second dose and a final appointment with my paediatrician… a new choice is I’ve now requested intubation at birth if needed. Something I was originally going to avoid on the basis of her diagnosis but because of some positives in scans and because of my endless research into Trisomy 18 I now believe she has a reasonable chance of life (how long for is unknown) and I want to ensure she is fully assessed and not judged simply on the basis of her diagnosis. Martin McCaffrey also told me if she makes it past 1 month we have a 40% chance of survival past her 1st birthday.. I realise that must sound horrific to you all but I have gone through this pregnancy believing she only had a 5-10% chance of this so I’m clinging to hope.. it is all I have at this point.So to Ambers scan.. my fluid levels has gone up high this week … not great but hopefully will cause no problems. Her heartbeat is strong! Cord flow good and her weight… has gone up!! My baby girl is now estimated at 5lbs3oz which is INCREDIBLE for a Trisomy 18 baby!! Just over a whole lb more than last week! (that’s bigger than mum said said my sister Wendy was!! ) And.. I don’t know how much to read into this but Ambers hand was OPEN! To explain the excitement of this you need to understand that Trisomy 18 babies usually have clenched fists as Amber has had at all her scans so far.. this is a signifier of neurological/brain issues … so for her hand to be open is maybe a good sign?? I’ll be speaking to my paediatrician tomorrow and asking her opinion So to all of you please whatever you believe please send prayers or healing.. I am grateful for all.If you message me this week and I don’t respond (I will try) please understand I’m trying to find some calm and peace in between the fear and crying and I honestly feel at breaking point right now. I am utterly overwhelmed and have fears and worries I never dreamt existed. I still have hospital appointments, a hospice visit (dreading it) and other birth related stuff to do and I literally only started my maternity leave last Friday so I’m exhausted with terrible insomnia just to add to the mix and only a few days to find some sanity in the chaos.My next big update will no doubt be from the hospital.. My next Amber photos will be of my baby girl and I know she’s going to be just beautiful Photos from today Ambers tiny open hand and face and also a gorgeous photo of the wee jacket and bonnet my mum has knitted for Amber.. ready to pack in my hospital bag

23rd June 2021

A little Amber update… scan is a bit blurry (she’s a wriggler!) but beautiful strong heartbeat, growing well and weighing in at an estimated 1.10lbs

9th July 2021

Just had another scan I’m now 27 weeks +3 days. They said Amber was the most active baby they’d scanned today… as usual the sonographer was chasing her round to get measurements! Her growth seems to have slowed a bit, at 25 weeks she was measuring just over the 10th centile and today they estimate her to be around the 3rd centile (though on the W.H.O. they estimate the 5th). She’s weighing 2Ibs (894.09g) so I’m just hoping she catches up a little bit more by the next scan. Here’s the latest photos of my wee girl… (having a good stretch in one.. the sonographer was laughing at her!)

21st July 2021

My baby girl is sounding strong #keepinghope

22nd July 2021

@katieowl1700
My #pregnancy journey so far, from utter joy to the devastating news my little girl has #trisomy18 #edwardssyndrome #babygirl
♬ Loved You Before – Natalie Taylor

25th July 2021

When you’ve tried to be organised packing labour/baby/post-birth bags early and thought you’d been as ‘minimal’ as possible…the ‘stuff’ does not all fit in my safari labour bag, Ambers blanket, shawl and nappies will not fit in her yellow bag, I still have a couple of outfits to fit in my post-birth suitcase in case we have to go to Aberdeen quickly… hmmmm… conclusion… I am NOT a minimalist!

27th July 2021

30 weeks today Off for another scan..

Amber is doing really well As predicted my consultant had to chase her round whilst scanning because she won’t stay still! Amniotic fluid level is still high, (which is a concern but also common with Edwards Syndrome/Trisomy 18) so she’s swimming in there but her stomach, though still small is looking larger and more obvious than it did in my last two scans which is a positive… (I am praying she doesn’t have oesophageal atresia so this is a really important observation for me to hear ) And… her growth has improved, she is still tiny! BUT… she’s back up to the 10th centile which is back within normal fetal growth. A massive achievement for my little one and I’m proud of her already.Latest photos of my baby girl.. not quite as clear as last time but she is a wriggler!

12th August 2021

So had a lovely scan this morning and Coreigh got to see her little sister for the first time Scan picture was difficult to get today as Amber was in an awkward position so today we have…. A photo of her ear! She has a beautiful strong heartbeat, was wriggling around and her cord flow is good. My amniotic fluid levels have dropped slightly which is a bonus and though apparently they do fluctuate I’m taking it as a small ‘win’ because this is the first time it’s lower than at a previous scan. Her stomach has grown Again another positive, so much so even I could spot it on the scan! And the sonographer was delighted to tell me that Ambers growth has remained at the 10th centile, so yes she’s little but she is staying within normal growth for her age. They now estimate her to be around 3lbs15oz so she’s gained a whole lb in two weeks Baby girl is a little fighter

17th August 2021

33 weeks today My baby girl is a warrior queen

24th August 2021

Latest Amber update 34 weeks pregnant today! So some positives and one main concerning thing today. Ambers growth has slowed again She’s dropped back down to the 3rd centile size-wise which while not surprising with her diagnosis is still upsetting and hard to hear. She is putting on weight slowly but has only gained 3oz since my last scan and is now estimated to be around 4lbs2oz … still I have another 3 – 4 weeks before being induced so hopefully she will stay put until then and grow a bit more! Positives though… she has such a strong heartbeat and her cord flow is good! My fluid levels have increased slightly but are not up to previous high levels thankfully. Her kidneys are looking good, her heart though she has the VSD is looking strong and regular (this will be looked at properly after birth and potentially she may have surgery depending on how her health is overall) And best news for me today was her stomach size looks normal .. (I had a different sonographer today who said that has she not known about Ambers Trisomy 18 she wouldn’t have suspected there had ever been an issue with her stomach looking at it today )I have a big meeting tomorrow with my midwife, GP, fetal medicine, children’s hospice, health visitor and community nurse (I think that’s everyone!) about support for when (Being optimistic!) I bring Amber home. Scan not so clear today… she had her head hidden in my pelvis and her face turned away so we have a cute little cheek but no face view! We think she was sleeping and determined not to be disturbed