“A World Without Down Syndrome?”

#AWorldWithoutDownSyndrome is a hashtag that is making it way through the Down Syndrome community at the moment.

This is due to the documentary that is airing on BBC Two tonight at 9pm. The host of the documentary is Sally Phillips (The blonde friend of “Bridget Jones Diary” or “Smack the Pony” is what I remember her from).

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In the documentary, Sally, who’s eldest son Olly has down syndrome, will be investigating the new NIPT  that is offered to women during their pregnancies.

The Non-Invasive Prenatal Test (NIPT) was brought out on the NHS at the beginning of this year. It gives a more accurate result for chromosome abnormalities such as Down Syndrome.

Now on this subject, I sit on the fence. I believe that this test can be extremely helpful to parents who want to know if their child has down syndrome during their pregnancy. Instead of going through the shock of finding out at birth like I did.

However, the worrying side to this test is the fact that in the health care profession having a child with down syndrome is seen as a terrible thing. Women who find out their unborn babies have down syndrome are not given the full information of what down syndrome actually is.

I know that when LM was born I was scared witless and didn’t know where to turn and the doctors wouldn’t/couldn’t answer all my questions. They didn’t have the information to tell me and instead sent me home with a packet of leaflets and left me to figure it out myself.

While in the hospital the nursing staff were very quick to let know all the things that she probably wouldn’t do and didn’t really help dispel my fears. There was only one nurse who was truly honest with me. She explained everything that would happen next and where I could go for support. (I sometimes wonder if she had a child or family member with Down Syndrome, but I never asked)

I have said many of times though that I am glad I never found out that LM had down syndrome during my pregnancy because I know how scared I was in the early days and how little support/information I got, that I would have probably made a terrible choice.

This is because a lot of health care professionals will use scare mongering and tell the worse case, they use words like “Suffer” and “poor quality of life” to pressure word into terminations. Then there is the horrid fact that in this country if your child is found to have down syndrome or any other disability, you can be offered a termination up to 40 weeks.

Does this look like LM is suffering or have a poor quality of life?

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Now don’t get me wrong I am very pro-choice and I believe that it is a woman’s right to choose. However, I think that these women should be given all the information or a balanced point of view before they have to make this life changing decision.

Because honestly having a child with down syndrome is the same as having a child without down syndrome. You will change nappies, have cuddles and want to pull your hair out in frustration. You will lay awake at night worrying about what the future holds, wipe away tears when they fall and hurt themselves and you will count your lucky stars that this amazing child is yours.

Yes you have more hospital appointments and you will need to go for regular hearing test and physiotherapy appointments but what is to say that you wouldn’t be doing those things with a child who doesn’t have an extra chromosome?

I am thankful every day that I never had to go through this decision process and that i got to bring my daughter into this world before I was told she had down syndrome, because even though it was a shock and I was scared. I also got the chance to meet my beautiful daughter, I got the chance to fall in love with her and be her mother. She got the chance to change my world view and make me realise that Down syndrome isn’t anything to be scared about.

So I hope you watch the documentary tonight or catch it on BBC iplayer and see if you want to live in a world without Down Syndrome. Honestly, I know I don’t!

x Nikki x

 

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Please, don’t be sorry!

When LM was born and we got her Down Syndrome diagnosis, I knew that things would never be the same again.

It is strange how one moment can change your life so drastically.

The biggest change I have noticed is how people react when I explain I have a child with down syndrome. They look at me with sad eyes and mutter the words “I’m sorry”.

Please Don’t feel sorry us.

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I am grateful that this beautiful, clever and independent little girl is my daughter and I couldn’t be prouder.

She is truly amazing, as anyone who has spent more than 5 minutes with her will tell you.

Her smile is contagious, her determination is inspiring and the way she looks at life just makes you see things differently.

When we first got her diagnosis, I’m not going to lie I was terrified, but LM soon quelled those fears and showed me what true unconditional love was.

She had to spend some time in the Neonatal unit because she swallowed her meconium, which caused respiratory issues. She was fully ventilated for 5 days. I wasn’t allow to hold her, but I could touch her arm.

I would sit by her side for hours singing “You are my Sunshine” to her and willing her to get better and she did, It was then that I realised how truly incredible this little angel is and how blessed I was that she is my daughter.

She went from strength to strength after that and came home at 24 days old. We never looked back and only ever went back in to hospital for routine check ups and a whole host of other routine appointments.

LM was such an easy baby. She slept like a dream from birth and was a little angel to cuddle. I would find myself sitting for hours staring at her in her moses basket. Sometimes I would be wondering about how the world would see her and if they would see they beauty that I could see or if they would ridicule and make fun of her. I did and still do fear what the future holds for LM, as people can be cruel. But I just keep telling myself that I can help educated people and raise awareness.

I can let people know that people with down syndrome are just like everyone else. They have feeling, they have hopes and dream for the future. They want to be an artist or a dancer or a super models. Some just want to grow up and meet the prefect partner and fall in love.

LM is going to be 3 in October and has entered the terrible two’s. She knows her own mind and she will let you know if she doesn’t want to do something. Even with the tantrums and the difficulties most parents face having a toddler. LM has a way of making you forget the fact 2 minutes ago you wanted to pull your hair out. She will just snuggle in next to you, signs “sorry” and give you her cheekiest grin and any anger you felt just disappears.

I wake up eager to see her beaming smile on a morning. I love watching her grow and learn. She never stop and is always taking every thing in. Even when she was a newborn she would stare up at me with those beautiful blue eyes for what felt like an eternity, just drinking in my face and her surrounding.

So ok she might be slightly delayed with her speech and she might not have walked until she was 2 and trying to teacher her new things might take longer then some else. The fact is she will get there eventually. I know in my bones that LM is going to do great things because she is extraordinary.

So Please, don’t be sorry

Because I wouldn’t change a single chromosome about my daughter.

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Myths & Facts about Down Syndrome

Today is World Down Syndrome Day it is one day of the year that People born with the condition can celebrate with their families and friends as well help raise awareness and set  people straight on some of the common myths surrounding Down syndrome.

Because of this I thought I would share some Myths and Facts people have said to me since LM was born.

MYTH:  “Most children with down syndrome are born to older parents”

FACT: Over 80% of children born with down syndrome are actually born to parents under the age of 35. This is because younger people have a higher fertility rate. The average age of mothers giving birth to a child with down syndrome is 28. I was 26 when LM was born.

MYTH: “Babies with down syndrome can’t breastfeed”

FACT: Yes they can, LM is proof of that. We managed it for 19 months before I finally decided it was time to stop.
The start of our breast feeding journey was rocky as LM was so ill and was tube fed, which meant we did struggle to get her to latch on properly.
So instead I expressed my milk and we bottle-fed her because in all honestly Fed Is Best! But because she was my last child I was desperate to breastfeed so we would offer her breast before each feed and by the time she was 5 weeks old she was latching on, gaining weight and soon became exclusively breastfed.

MYTH: “All people with down syndrome are the same”

FACT: While people with down syndrome can had some similar psychical characteristics such as smaller almond shaped eye, single palm crease and sandal toe gap, they don’t all look or act the same. Just like every body else, people with down syndrome tend to look like members of their family.

MYTH: That people are defined by the condition “A Down’s kid”

FACT: You should always use first person language. Just because a child is born with down syndrome doesn’t mean that it defines them. People with down syndrome are all individuals, that have their own personalities and like to make their own choices.
I know LM know her own mind at 2 years old and if she doesn’t want to do something she is very stubborn, she is also cheeky, kind and loves to make people laugh. That is because she is who she is and not because she has down syndrome.

MYTH: “People with down syndrome are always so happy!”

FACT: I can tell you right now people with down syndrome aren’t always happy. They have the same range of feelings and emotions as everyone else.
LM is 2 and because of this she throws tantrums if she doesn’t get her way or does’t want to do something. She gets frustrated if we don’t understand what she is trying to communicate to us or if she can’t do something or play with the toy she wants. She gets jealous if she sees my cuddling another baby and has to show them that I’m her mummy! She can also be sweet and give you a cuddle if your upset and likes to see people with smiling faces but honestly what 2 year old child doesn’t?

All because I wouldn’t let her chew on my phone charger and electrocute herself. I’m such a mean mummy!

MYTH: “Down syndrome can be caught or cured”

FACT: Down syndrome happens during conception and is caused by 3 copies of the 21st chromosomes. It happens on a genetic level and it is still not known what causes some cells to have extra genetic material. It is not cause by anything the mother or father did before or during the pregnancy. Down syndrome is a condition and not a disease, so can’t be caught or cured and people with down syndrome don’t “suffer” aren’t “affected” and are not “victims” they are just people.

MYTH: “Some people only have a little bit of down syndrome”

FACT: You either have down syndrome or you don’t.
People with down syndrome can’t have it a little bit more or less then someone else with down syndrome but they can have a different type of down syndrome, such as:
Trisomy 21 (which is the most common type of down syndrome and where every cell in the body has 3 copies of the 21st chromosome),
Mosaic DS (where some of the cells in the body have the extra 21st chromosomes and other cells don’t),
Translocation (where the extra 21 chromosome is broken up and attaches itself to other chromosomes in the cell. This type of down syndrome can be heredity)

MYTH: “People with down syndrome are unwanted, so their put up for adoption or taken away from the family”

FACT: In the past people with down syndrome where set away to live in institutions because people thought that if you had a child with down syndrome it was shameful or that the parents must have done something to cause it.
Thankfully nowadays we know that having a child with down syndrome isn’t anyones fault and is actually not as scary as most parents first thought. This is because there has been a major increase in support for families and a change in attitude towards people with down syndrome.
I know in the beginning I was scared and I thought I would do something wrong and that I wasn’t good enough or strong enough to handle bringing up a child with down syndrome and in those early days I briefly thought about adoption, but thanks to the support I found online and meeting other parents of children with down syndrome I found out that what I was feeling was normal and that instead of focusing on the fear and uncertainty, we should love our children for who they are and should be celebrating Down syndrome because it is a part of them.

That is why on the 21st day of the 3rd month Parents, families and friends all around the world celebrate World Down Syndrome Day.
(The 3rd 21 of the year)
Because we want to spread the message that down syndrome isn’t something to be feared, ashamed of or eradicated through testing. It is something to be celebrated because people with down syndrome are people just like us and all they want is to be loved, respected, accepted and to be given the chance to be all that they can be.
Just like everyone else.

x Nikki x

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The lessons Down Syndrome taught me

Before LM made here rather dramatic entrance into our lives. Down syndrome was something I, personally knew very little about. I knew the basics about it from what I had learnt when I was studying my Alevels but I had never really met anyone with the condition.

This is why at the very beginning of our journey I was so scared and worried about how I was going to cope. I knew nothing about raising a child with additional needs and constantly wondered if I was doing the right thing. Luckily, LM is an amazing teacher and soon taught me, I had nothing to fear and in no time I felt confident in both mine and her abilities.

So here are some of the amazing lessons that my LM has taught me:

  • Acceptance
    The DS community is massive and is filled with loads of other parents and family members who are going/have been through similar situations as myself. It is a great place to get advice or even air your highs and lows (because we all have them). I found joining the Facebook groups helped me to realise that people who are born with DS, don’t want to be treated any differently to anyone else. They have the same feelings, dreams and determination as you or me.
  • Love
    To some people this might not make sense but it wasn’t until LM arrived into this world that I really knew what true unconditional love was. When my other 3 children were born I instantly I loved them but with LM I was faced with the fear of almost losing her, the unknown about her future and the crushing blame I put on myself that it was my fault she had DS. She changed all that though, the first time she smiled at me and gave me hope that she would be ok.
  • Patience 
    With my older children I took for grated the fact that I knew they would crawl, sit up, walk and eventually talk. When LM was born those were the first things I worried about if she would be able to any of those tasks and people couldn’t give me an answer if is she would do one or all of these things. They just didn’t know what her future held and we would have to just wait and see. What they did tell me was that people with DS tend to reach all the same milestones as everyone else but their journey is more of a scenic one, so it takes a little longer to get there.
  • Pride
    The amazing sense of pride and accomplishment you feel as a parent when you watch your child finally achieve something that has taken them weeks to learn, it is amazing. It fills your heart with love and admiration because you know how much time and effort they have to put in to learning something that to us might seem like a simple task.
  • Determination
    LM has shown me that you can’t just give up because something is hard or you are scared of the out come. Instead to keep on pushing through the hard times and the mistakes with a smile on your face and the odd cuddle every now and again. LM has hyper mobility (low muscle tone) but even with that and the issues it can causes she has always had a determination to move and get mobile.
  • Strength
    I have always classed myself as a strong woman but it wasn’t until LM was born and nearly died (in the same night) that I realised how strong I really was because I needed to be strong for her and my family. When I had to leave her in the hospital and go home it tore me apart but I knew I had to keep it together best I could for my other children. It was not easy explaining to them why mummy hadn’t brought their new little sister home with her or why mummy kept fighting back tears every time see looked at the empty moses basket or saw a baby on TV.

One thing I know for sure from everything that has happened is that having LM has made me become a better versions of myself. She has brought a fun loving and heart warming sense of joys to my life, she is a constant source of encouragement and love to everyone around her. Just by simply being around her and her beaming smile you are instantly up lifted. She fits in perfectly with our family and I sometimes wish I could go back to the early days and tell myself not to worry, that LM will be cherish by everyone, even if she does infuriate me at times by constantly posting my keys, phone or Sky remote into the dust bin.

She is the best teacher I could have ever ask for and I would follow her on any journey she wants to take because even though we will end up going the long why round i know we will still get there in the end and see some wonderful sights along the way.

I love you Little Miss.

Nikki  x

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Her Extra Chromosome, just means there is more of her to love!

On the day Baby was born I was thrilled and excited because finally our family was complete. We had decided while I was pregnant that thus would be our last baby.

My first cuddle was bliss and I loved the feel of this tiny and very floppy baby in my arms. She was only 6lb 10 which a shock compared to my other children who were closer to 8 to 9lbs.

Our joy was short lived though as a few moments later the doctors uttered one little sentence and our happy little bubble quickly began to crumble.

“We suspect your daughter has Down syndrome.”

With 7 little words my whole world was turned completely upside down. Being a mother and a worrier my head went straight to the worst case scenario.

In what felt like a life time, but was more like a few seconds. I had every fact I knew about Down syndrome, all the negative news articles I had ever seen and images of how people and child with the condition where portrayed on TV and in magazines flash through my head, as I held my new tiny bundle in my arms.
As quickly as that first rush of love hit you after you have your bundle placed on your chest it was quickly replaced with my fear. I feared that Baby would have a really poor quality of life, that she would never achieve anything and would grow up being unable to do the basic of tasks like feed, clean or clothe herself and for a brief few seconds I wondered to myself;

“Is this actually something you are able to take on and deal with?” 

Yes, I thought this about my own child. The same little person I had helped create and carried for 9 months, the one I had just spent the last few hours in labour with and had been eagerly excited to meet. The same little person, just minutes before I had held in my arms and felt completely different about, I was now looking at and feeling unsure and over whelmed about, all because she had an extra chromosome.

In someways what happened next with Baby was a kind of a blessing, a horrid, scary and nerve wrecking one that I wouldn’t wish on my worst enemy. But still a blessing as it made me realise my true feelings and it made my mothering instinct override all my silly fears and thoughts, it made me realise that it didn’t matter that she wasn’t the baby I had dreamed of for the last 9 months, she was still mine and I was going to fight for her and will her to fight too. (You can read all about it here and here)

From that day our lives went on a bit of a roller coaster. The early day where really hard as I had to accept and learn to deal with some much. I was given so much information but non of it answered the most basic of questions, that I wanted answered.

  • Would she walk?
  • Would she talk?
  • Would she fall in love?
  • Would she have a bright future?

These question went around my head almost constantly and while I sat at the side of her in the NICU watching the machine beep and breath for her. Each day brought a new little challenge with her, the hardest one I have found to date was leaving the hospital with out my baby.

Luckily Baby is a fighter and she managed to start breathing on her own which meant no more ventilator tube or nose canular. It took her a little longer to learn to bottle feed but soon as she got the hang of it, it was bye bye feeding tube.

When she was 24 days old, we were finally able to bring my Baby home. It was at that point my fear returned slightly, I would find myself being scared of anything happening again and I wouldn’t know what to do, I was scared she would stop breathing again in night, I feared that people would judge me and think her DS was my fault.

I knew deep down that wasn’t the case but in my hormone run, sleep deprived brain, I was still blaming myself for something I had no control over.

After a while Baby grew bigger and stronger. She managed to move from bottle feeding to exclusive breastfeeding, which was an amazing mile stone. Then in no time our lives became a blur of appointments Baby needs to have, but with each appointment that came there was also great news that she was doing great and growing well.

For me all those appointments still didn’t manage to dispel my fears and when ever I dealt with one, a new worry would quickly replace it.

That was until the day Baby smiled at me for the first time. Her little beaming face shone up at me and melted all my worries anyway. It was that moment I knew this girl had strength in her that meant nothing would stop her. It was that moment that I realised that, so what if she had an extra chromosome, it just meant their was a little bit more of her to love.

Now I’m not going to lie to you and say that those fears never crept back and that after that I never shed any tears, because I did and some days I do sit and wonder how I’m going to cope with the next stage of Baby’s development, I worry about what will the future will have in store for her and I feared how people might see or treat her as she grows up and becomes even more independent.

 

But for now I just look into her smiling face and know that what ever happens and what ever life brings we will deal with it and get through it together because she is my strong, beautiful and amazing Baby that’s going to show the world how it’s done.

Nikki x

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