I am the 1…the 1 in 4,000 affected by Edwards syndrome. The 1 told by doctors that I had “pulled the short straw” this time. The 1 that had to fight for care for my unborn child. The 1 in 10,000 to have rare and complex congenital heart defects as a result of said syndrome. And the 1 of the 10 to have a stillbirth that day.

Yes I am the one affected by Edwards syndrome, and now I am the 1 with a baby who died.

We throw around these statistics to pregnant women, and in conversation in medical settings, like it means nothing or that is something so rare. Perhaps its even down played that they have nothing too much to worry about (or heaven forbid it would be me). But when it comes to one of the babies with an extra 18th chromosome… it is me, and to me (the 1) it means everything. To us with the short straw it is our world and lives shifting from what we once knew and hoped for. It is a dream of a precious new baby, another sibling, and a lifetime together, turning into an awful nightmare, and a life with a broken heart.

Stats mean nothing when suddenly you become the stat!

March is Trisomy 18 awareness month (though as yet I’ve barely seen anything about it anywhere), and I want to share with you not just awareness of the syndrome and how it affects families, but I want you to become aware of how little is done to help the babies who are diagnosed with it. (And when I say little, it’s usually a big fat Zero!).

Edwards Syndrome

I’d never heard of Edwards syndrome/Trisomy 18 until my 3rd pregnancy when my 20 week scan revealed some major health problems with our little girl. What that meant was that I had had 2 other healthy babies and never heard it was potential risk to them either…not just potential but that it was the 2nd most popular syndrome in the UK with 1 in 4,000 babies affected by it.

At that time (within the last 6 yrs) there were no routine tests for it like there was with Downs, and no one ever really talks about any of the potential chromosome risks unless you physically (because of previous pregnancy or age) are a risk. I feel like it’s often brushed over, and even in my latest pregnancy (2016) when I was offered testing they just quickly mentioned the names of the syndromes with no explanation of what they were or how they would affect my unborn baby.

 But what I also didn’t know 3 years ago is that medically, babies diagnosed with Trisomy 18 are labelled as “not compatible with life ” and subsequently all care withdrawn – Another thing they would NEVER tell you when they offer screening in early pregnancy!

And its not just care that is withdrawn, I’m talking food too! At least that was my experience here in Yorkshire… And to make it worse, they really make you feel like it’s the kindest way, because anything else you would hope for, to give your unborn child a fighting chance, you’re just prolonging the inevitable…

 An Edwards Diagnosis

At 20 weeks my baby was diagnosed with a very rare form of CHD (congenital heart disease), it wasn’t anything we carried or had done, more just “one of those things”. Her life expectancy went to a maximum of 15 years and a life of intense open heart surgeries and drugs to patch her up. It was later revealed via an amniocentesis that the cause of this (and a diaphragmatic hernia), was a chromosome defect known as Trisomy 18 – or Edwards syndrome. She had it to its full whack meaning every cell, and every new cell would always have an extra 18th chromosome.

I remember the horror in my heart when they told me at about 32/34 weeks that she would no longer be a candidate for heart surgery at birth.

I remember feeling so alone and speechless to be told that when she was born, “we would just make her comfortable until she dies!”. The plan was named “comfort care”, but there was nothing comfortable about it, and looking back I didn’t at that point quite grasp that either;

Me: “I plan to breast feed her, so if she struggles sucking, we can tube feed her that right?”

Them: “No she won’t be feeding, she won’t have anything. You can hold her and we can give her drugs to make her comfortable until she passes away” …

 “UNTIL SHE PASSES AWAY????” How do they know she doesn’t have 2..3..4..weeks or months of life in her? Who are they to withhold care and nourishment from my baby because a book told them that this syndrome = not compatible with a life? Life limiting yes, but she is entitled to a chance at some life with her family surely?

And how did they know that they weren’t cutting it short because she’s not in their eyes compatible?

At this point I knew of babies UK and worldwide that were living for months, and some for years. I just wanted time, any amount of time to meet her. I wanted some time to be her mum and time to kiss and cuddle my baby. I wanted a family picture and to take her outside and feel the sunshine on her skin. I wanted time to have her blessed, to be in our home, and to meet her family that were very much looking forward to meeting her.

She was fighting inside and I just knew that with some help and faith in her, she would fight outside too.

 I remember thinking that the original heart disease diagnosis was great compared to this.. and then wishing she had Downs, or even some kind of cancer,  because as hard and as horrible as an illness as cancer is, it would actually have meant that they would do something for our child. They would care for her, they would give her a chance to life.

I wished in those final weeks of our pregnancy that I had never had that stupid amnio they pushed me towards, because you know what? Then they would have had to give her a chance to life because they wouldn’t have any formal confirmation of anything!

I gave them what they wanted in faith it would enable them to better care for her, and in return they took away what I wanted!

And that is the reality of Edwards syndrome that no one wants you to see…their label… their lack of care. The lack of compassion… the constant pressure to “terminate” this life.

No chances and little hope.

I fought for weeks for a care plan, and research led me to understand that babies left til their due date often will be stillborn as the placenta stops working … with this piece of information in a study via SOFT UK, I begged for induction and to have her born alive whilst she was still growing and kicking. But who was I? Certainly not a doctore and certainly not someone they were wanting to take seriously. They finally agreed to a care plan beyond comfort after 4 meetings, but didn’t (or wouldn’t) listen on the induction front, no matter how much I asked they wouldn’t!

And so it ended in how we suspected – at 39 weeks + whatever days (full term) I found out she had gone.

She was born asleep on her due date, and after another fight for them to “please test the placenta” it revealed that patches weren’t receiving oxygen and it had an infection… was that a coincidence? I don’t think so… Mum.knows.best! We obviously choose to listen to some research and not others.

So that is what 1 in 4,000 looks like. That is what being the 1 means – A death certificate instead of a birth certificate. A fight for care in pregnancy…A grave where your child lays, and a lifetime of memories gone. A brief cuddle when you long for many more. One little kiss, and a box of memories I look at, of baby things to remember that she was here…

I am the 1. She was the 1.

 
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I am honestly really sad to be saying goodbye to February. Any month that ends with an excessive amount of pancakes, in my mind is a great month. It seems like last year February was such a blur, and in contrast to the sadness we experienced then, this month has been so good to our family.


It seems like it was ages ago when we took these family pics on our day to York, and yet it was only 2 weeks ago. The sun was shining brightly, the weather mild and it was a deliciously perfect family day out (until we decided to get the bus during rush hour with a hungry baby!). Nathan took the whole week off as annual leave and it was  one of the best half term breaks we have had in ages. It was jam packed with adventures and days out, and was just great to do so many lovely things together and enjoy the break from school runs and the usual madness of term time life!

I have decided to do our family updates slightly differently from now on. In addition to my brief ramblings on summing up the month, I have also decided I would like to share the things we are grateful for each month too instead of the “what we are loving”. I guess it incorporates those things naturally, but I want to use these monthly pictures and family updates as an opportunity to count our blessings too. So…

This month we are grateful for:

Selling our House…and that we are buying another (hello more space)

Press passes to Scarborough Sealife and the opportunity to see all manner of creatures!

The opportunity to celebrate my Grandad turning 87

Our visit to York Chocolate Story

Annual leave and having Daddy home for a week

Grandma having Alice after her swim so we could all play/race together on the slides

So whilst I am excited to say hello to spring, to have lighter nights, see new life in nature and have way more adventures and huge changes coming our way in March/April, I am sad to bid farewell to February. It has been amazing for our family and I have thoroughly enjoyed all we have done together and the wonderful opportunities we have through my blog.

The Me and Mine Project
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There are moments in our lives that we can clearly pin point as being the end of one chapter and the start of another. Sometimes these moments are natural ones that come with age like finishing High school and moving into the chapter of college, work or uni. And yet at other times they are sprung upon us and completely out of our control and miles away from our plans – like tragedy, redundancy or when a person close to us dies, and we have no choice but to be dragged along with the current into a new place and chapter of our lives.

Often though they come as a result of our choices…We choose to get married. New chapter.  We choose to have a family. New chapter. We choose to apply to a new job. New chapter. We choose to move house. New Chapter. And that’s where we are at right now – a choice and a moment that puts us on the edge of a new chapter in a new place, with kids at a new school and closer to where we came from, and yet further away from what has been so familiar to us.

I have talked a lot over the last few years about the prospect of us moving house in the near future. Nathan’s university graduation, an extra child in the home, and even bereavement have all played part in propelling us closer to that choice and the idea of our little family living somewhere that is more peaceful in a house offering more for our needs now. And so this year we set it as our goal. We never envisioned it happening so quickly but it has, and it feels so right! Whilst it is for most of us one of those ordinary moments in life, it feels like a huge extra ordinary moment too. Something so big and a little scary all at the same time, but it is something we are ready for, ready to embrace and excited to jump into with both feet. We are moving house!!

We sold our house in 5 days and the following week (this week) had our offer accepted on one we have been eyeing up for a while. Nothing is final yet, we still have all the solicitor things to go through, but our house is sold…the house we want is now sold and we are hopeful that things will go ahead smoothly from here, and within a matter of weeks we will bid farewell to our friends and the city we have called home for the last 9 year’s. We close the door on the city that held huge chapters that saw us dating, marrying and having our family (and all the highs and lows that came with that), and open the door to our new home and with it, a chapter of life in a little village over in East Yorkshire where we can raise said family with a different pace of life. It will be our 3rd home as a couple, our 2nd with kids. We will have a new home that fits our families needs now in this chapter of life, in a place to offer us more peace, more natural beauty, more rural living, closer to where our Poppy is buried, and ultimately more opportunities for us to spend time with both our families.

These pictures were taken last weekend when we had a glorious day together in Scarborough, and I remember that day just feeling so blessed in that moment as I looked out on the calmness of the sea and felt the sun on my skin. I felt like a new season was almost here, spring was in the air and with it a new season and chapter for us too. We felt exciting things were on the horizon for our family and we talked about how lucky we would feel to have both the Yorkshire coast and Wolds right on our doorstep. How different life would be. I watched the kids charge to sea, so free and happy and I knew this was what I wanted for them…

Life is built up of chapters and full of moments that start and end those chapters, and we are greatly looking forward to this next one and cannot wait for a new home, new life and new moments together.

The Ordinary Moments
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Yesterday I tried my hand at Hungarian Pancakes! In the words of my kids “they were the best Pancakes ever” which I assure you is purely down to the fact that these pancakes are much sweeter than your regular fluffy breakfast sorts or crepes, and more of a dessert pancake, so therefore being the little sugar monsters that they are, I wouldn’t expect anything less.

We have a little bit of a tradition in our home, that on the weekends I tend to make a breakfast instead of the usual grab some toast and cereal in the weekly rush. We enjoy the opportunity to sit together and make breakfast more of a thing, start the weekend off a little differently and you can guarantee that the kids will always opt for Pancakes!

I love this little thing we have going, because to me pancakes were only a thing we did on “Pancake Day”, and my mum would make a tonne of Crepe style pancakes that we would enjoy first with a savoury mince, and then with Lemon juice and sugar (and in later years chocolate spread!). It must have taken her ages with 4 of us and them, and perhpas that is why they were only a yearly treat!

Having spent some time living in the states in my early 20s, I began to enjoy American style pancakes with maple syrup as a breakfast, and these are the ones I tend to go for on our weekend pancake breakfasts. We enjoy them with berries, natural yogurt and either honey or maple syrup, and as if Megan plays it right she can often bag herself a sneaky midweek pancake breakfast before school because we love them so much.

As we approach Pancake Day Next week, we have teamed up with Expedia to inspire you to try a new “World Travel” inspired pancake creation. As our regular pancakes are already inspired by America, we decided to opt for something completely different, hence yesterday I made Hungarian Pancakes…

Hungarian Pancakes

Like all pancakes, the Hungarian variety require the usual cupboard staples of Flour, milk and eggs, the difference however is the added sugar and soda/sparkling water, thus making them a lot sweeter,  and less appropriate maybe as a breakfast! They are thin, similar to crepes and have all manner of jams and spreads inside, rolled up and topped with powdered sugar.

Ingredients/How to:
  • 1 egg
  • 1 teaspoon of sugar
  • 150 grams of plain flour
  • 300 ml of whole milk (though I used Soya and it was fine)
  • 150 ml of sparkling water or ½ teaspoon of baking soda + 150 ml water (2/3 cup)
  • pinch of salt
  • icing sugar for dusting
  • oil for frying

In a bowl whisk the egg with sugar and salt and then add in milk and flour a little at a time to avoid lumps. When its smooth add any remaining milk and the sparkling water.

Batter should cover a hot pan as a very thin layer with no holes!

What we liked

The kids loved how they were rolled up and sooo sweet. They found them to be a real little treat and easy to eat, and this too was a novelty about these pancakes.

I really like them as a quick/cheap dessert and will probably go ahead with them this pancake day as just that. They certainly are tasty to follow up a regular nutritious dinner ! I thoroughly enjoy trying out new recipes and seeing other countries take on an old fave. Its so interesting how different parts of the world can take something and yet eat it in a totally different way.

Why not take your kids on a tasty trip around the world this Pancake day by making some travel inspired pancakes! Its so much fun to mix things up…and who knows you may find a new family fave that might just inspire you to book a little trip yourselves.

My Petit Canard
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