“The Room with the Box of Tissues”

 In General

Stacey Byrne, Trustee/Co-Founder of ‘Making Chromosomes Count’ shares her Pregnancy & Birth Story.

it can be a scary place at first, but for us it became the place where we came to learn about and love our baby.

 

OUR PRENATAL STORY (2013)

How much do you know about Down Syndrome?

At the time we found out our son had Down syndrome we realised we knew next to nothing, too.

Evan (5y)

One of my close friends Nikki, is a midwife and looked after me throughout my pregnancy as she had with Evan’s two older siblings. I remember her coming to my home and booking me in, talked me through the combined screening and asked if we were opting in or out? As I did with my previous pregnancies, I opted in and ticked the box. No real thought went into it. You’re wondering why? Because “that” wouldn’t happen to me so it’s not something I needed to think about, right?

Wrong…

Before we knew it the 12 week scan was here. We were so excited and couldn’t wait to get there and see our baby for the first time. This was my husband’s first baby, (I already had 2 boys) so he was extra excited to meet and hear our baby’s heartbeat for the very first time. However,

it didn’t go to plan…

Matt and I sat together in the waiting room excited, talking all things baby. We watched other parents coming and going with their baby scan pictures clutched in their hand, smiles beaming across their faces. We were smiling at each other thinking, “us next”. Before we knew it, off we went, into the room for our scan. We couldn’t wait!  I hopped on to the bed. Cold gel applied. I lay waiting to hear the magic heartbeat. And guess what? We did! We heard it. We heard it loud and clear. The most perfect sound, the beat we had waited weeks for. Followed by

the silence…

Very quickly it became clear something was very wrong. The sonographer finally spoke.

l need a second opinion. I need to call for a consultant.

12 week scan.

The joy of hearing the heartbeat vanished. We knew something wasn’t right. She cleaned off the gel and ushered us into a side room to wait. You know, the kind of room that has a box of tissues on the table. The kind of room when you know you are going to hear something life changing. Yeah, that room.

We waited and we waited. It felt like a lifetime. No spoken words. We were in total shock. What could be so wrong? We felt sick to the stomach. Tears rolled. Panic had well and truly set in. What have they found? What’s happening? What’s wrong? What’s taking so long? The warmth and exhilaration had drained from us.

After around 45 minutes the door swung open. A consultant appeared asking if he could re- scan me. “Follow me”, he said. I found myself back in that same position, albeit laying on a different bed, in a different room (a “better scanner” apparently) knowing there was a heartbeat but not knowing a lot else. I lay there nervous, fearful, vulnerable, in tears. Facing the fear of the unknown, waiting for someone to say something. Matt sat next to me with a look on his face like he was watching a horror movie unfold.

Okay. I have double checked measurements, we should finish up here and go and discuss this.

We were walked back to “that room”. The box of tissues room. You know, the one where he will break the bad news, tell us what’s wrong, give us the information that I knew we didn’t want to hear.

The nuchal fold on your baby’s neck is significantly high. It’s 12.3mm, which indicates a chromosomal abnormality.

He told us that our baby probably wouldn’t survive. He proceeded to say that he had not seen a measurement like that for a long time. “It’s a significant measurement”, he said, and most likely the heart would stop before 20 weeks’ gestation. They had also detected cystic hygroma, indicating hydrops. Hydrops is a life-threatening condition in which a foetus has an abnormal build-up of fluids.

You can terminate.

We were asked if we wanted to terminate our baby. He would not survive anyway apparently. He will die during the pregnancy, before reaching 20 weeks, apparently. Yep, he slapped on a death sentence before we even decided to test further. Can you imagine? How could he be so sure my baby wouldn’t survive? I knew very quickly that termination wasn’t an option for me. Matt looked so terrified he couldn’t even talk.

Evan, 4 months old.

All sorts of thoughts started filling my head with worry and fear. What on earth does this even mean? One of my first thoughts was, “How will my other two children react to this? How do I start to explain it to them? How will this impact their lives? How on earth will they even begin to understand?” And then there is me, an older mum. “Will I be able to look after a disabled child, when he’s 20?” I will be on the road to 60. “How will I do it?” And selfishly I also thought about how our family would look to other people.

My husband, Matt, said to me afterwards that,

on the information we were given, if it was his choice, he would have terminated.

Of course, he thinks totally different now, but at the time he was petrified.

Once the consultant realised that we would not consider that option we talked more. He talked through and explained we could have something called ‘Non Invasive Prenatal Testing’ (NIPT). He explained that it tested for certain syndromes, Down syndrome (T21), Turner’s syndrome (monosomy X), Edwards syndrome (T18), & Pateu’s syndrome (T13). I knew nothing about any of them. At this point he couldn’t confirm which chromosomal variation my baby did have, even though he was pretty sure we were looking at Down syndrome. So we opted to have the NIPT. It felt this was the natural next step for us without risking a miscarriage by opting for amniocentesis.

We made an appointment for 2 days later at a nearby private hospital. The test wasn’t available on National Health Service, back in 2013. We left that day very different to how we walked in, that’s for sure. Unfortunately we weren’t offered any information or support so, as you can imagine, we headed straight home to ‘Google’.

We started weighing up which Syndrome would suit our family best, searching pictures to see what our baby could look like. You know, does Down syndrome look “better” than, say, Turner’s syndrome? Sad but true. Trying to convince ourselves it was going to be ok was difficult at that time.

Two days later and we’re back, drawing blood to be sent it off to America, before the 2 week wait…

Those two weeks were the worst two weeks of our lives. Unfortunately that Christmas wasn’t the one we hoped for. We’d had the test on December 16th. We were totally out on a limb trying to make sense of it all. We still hadn’t been given any information. Nope, nothing, not even a leaflet. Just sent home to wait. We felt lost and alone with no support. It was a heart-wrenching and confusing experience. We felt devastated, but we carried on Googling. We felt we needed to. It gave our minds something to do.

Finally, while I was driving, the awaited phone call came. I pulled over…

Hi Stacey, I have your results. I have bad news. Unfortunately you are carrying a boy with Down syndrome.

We opted out of any further testing as we knew our decision was made and this diagnosis was enough for us. I decided to start to tell people, starting with my family, and friends. I had lots of heads tilts, “sorry”s and “are you keeping it?”, which I kind of expected. I felt the same when I was told. I was sad, worried, and scared too, so why would I expect others to be any different. Once our family and friends realised that we had chosen to keep our baby, attitudes started to change.

My pregnancy continued, with many ups and downs, it was an emotional and fearful time, we discovered Evan had heart issues at around 20 weeks and continued under foetal medicine. We had many scans, and were monitored very closely for the duration of my pregnancy. I’m not gunna lie,

it was a bumpy road!

My pregnancy was a worry from start to finish, every twitch, every pain, every movement, every scan, every appointment. From labour to birth, from birth to …

We had around 6 months to find out as much as possible. We knew nothing. We’d never crossed paths with anyone who had Down syndrome. We only knew what our consultant told us and that wasn’t a pretty picture. I sourced Down syndrome support groups, talked to parents who had children with Down syndrome and started my journey with them. We’re still on that journey with them today.

Evan arrived at 37.5 weeks. A normal delivery, 4 hours from start to finish. He weighed a healthy 7 pounds, needing no intervention, with only myself, Matt, Matt’s mum and my midwife in the room. Breast feeding was established right away. I cannot explain the love in the room that day.

Evan, half hour old.

After many tests we took Evan home, just two days later, and introduced this amazing little boy to his new family. The boys couldn’t wait to meet him. They were right away intrigued by Evan’s features, especially his almond shaped eyes. They asked lots of questions, I think to feel reassured he would be ok. After all the questions they settled right into being the protective big brothers they still are today. Evan and his brothers welcomed another little brother into this world in Jan 2016, Olly. Evan is a wonderful big brother to Olly. All 4 boys have such a special bond. 

 

 

Having Evan in our lives has been the most amazing journey. We have learned very quickly that all our children bring something different into our family and Evan has done exactly that. He has taught us more than we could ever teach him. He has shown his siblings how to open up, be more accepting, and shown them true strength and determination. He has brought our family together in a way that I didn’t think possible.

Evan (5y)

That day I was asked to choose if I wanted to keep our baby or not, it was a difficult day. Up there with one of my worst days. A day full of fear and tears and the unkown. Evan was planned and very much wanted. The negative perception of the many syndromes we came to learn about, and the reality that my baby may die before birth, was overwhelming.  For us, it was the right decision. Evan has enriched our lives. The unconditional love and the protection for him is unbelievable. And this is where the fun begins.

To be cont…

The Byrne Family (2019)

 

For more information or support – enquires@makingchromosomescount.co.uk

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