If I knew what i know now, back then

Getting a positive diagnosis for Downs syndrome is heartbreaking. There really is just no other way to put it. I wish i could make that moment seem better, but in that moment, looking a my poor sick baby, i felt like the world was collapsing around me.

As I've said before, I was so young when I had Harry. I didn't think i was then but looking back I wasn't prepared for anything of this magnitude. I convinced myself that i was young and healthy and had been doing everything right, so there was no way that anything could be wrong with my baby, I wasn't high risk.

I was wrong obviously. And 19 months in (Where did that time go?!) I know now that it really isn't the end of the world. If I could go back to that moment, there are a few things I would love to tell that scared. tired girl...

1. He will still love you more then you can imagine - Harry having disabilities doesn't make him any less of a human. He's still a fun loving cheeky monkey who loves me and Sam more then i ever thought possible.

2. You wont love him any less - One of the biggest things I was worried about was not being able to love him. What a stupid idea that was. I didn't know this amount of love was possible.

3. He can still do everything you dreamed for him - When i was pregnant I had huge dreams for Harry and hearing his diagnosis, I thought he would never do any of them. But he can do anything he sets his mind to. It might take him a little longer to get there, but he sure will!

4. There is a whole world out there you will discover and fall in love with - Harry has opened so many doors for me. His diagnosis has led me to meet some amazing people, and gave me something to write about, after not writing for years because i was uninspired. He is my inspiration. Every single day.

5. You will all be just fine.- And we are. We are just a family getting by every single day

I'm not saying that everything is perfect. Nothing is every perfect and there are struggles that parents with kids with no special needs will never understand, and i worry every single day that Harry will be singled out. But we will get through it, because its not the end of the world.

You know you're a mum when...

What does it really mean being a mum? What are the things that no one really ever tells you? Thinking back to before I became a mum, I was warned about the sleepless nights and the stinky nappies and about finally putting someone other then me first. But there is LOADS that no one ever told me about, some of it seems stupid but its my life now.
I couldn't have come up with the list of things all on my own so I posted on some of my best mummy pages on facebook (shout out to you girls if you are reading! You are AMAZING!) and here are some of my absolute favs that they came up with;
YOU KNOW YOU ARE A MUM WHEN...
You find yourself hiding in the bathroom eating sweets so you don't have to share...
You hear a cry as soon as your toe dips in the bath...
You're terrified of someone else's baby crying in public because your boobs turn into waterfalls...
You can change a shitty nappy half way through eating your cold lunch without batting an eyelid...
All you wish for is kid-free time but as soon as they are gone you sit staring at pictures of them until they come back...
99.999% of your conversations revolve around poo...
When you say sentences like 'no that's not chocolate it's poo! don't eat it!' on a regular basis...
You look like you've just rolled out of a dustbin but your kids are the best dressed on the block...
It's perfectly acceptable to sniff another humans bum...
You've had sick in your hair for three days straight but there is just no time to wash it...
Baby events are the highlight of your year...
You go to work and pray someone will talk to you about something you actually understand... like why Pepper pig is such a brat and who stole the pie in Noddy...
A 20 minute shower feels like a day at the spa...
You are more interested in whats happening on Pepper pig then eastenders and carry on watching even though the kids went to bed 20 minutes ago...
Mum is both the best and worse word in the world (Why do they never ask dad?!)
Baby wipes clean EVERYTHING, spilt drink? baby wipe. Stain on clothes? baby wipe. Make up (as if) but baby wipes take that off too...
Dry shampoo is the extent of your pampering routine...
You cover the wet bed sheets in a towel and go back to sleep because its the first decent nights sleep you've had in about 200 years (or so it feels)...

And soooo many more. The point to this is, being a mum is selfless, and random and sometimes its horrible to think about, but at the end of every day you realise. They are worth every single second

So add your own in the comments if you can think of any others

YOU KNOW YOU'RE A MUM WHEN?

Why groups on facebook are amazing!

All the way through my pregnancy I was told to make sure I went to as many mother and baby groups as possible when Harry finally got here, only that didn't really work out for me with him being so ill at first and me being so terrified of him ending up back in hospital I found that unless Sam was dragging me out I generally stayed in the house with Harry, where I knew he was safe (although part of that was also my pnd). Being home all the time I found I didn't really have any support. I didn't have friends who had newborns let alone newborns with special needs, so I felt alone. That is until I found mummy groups on facebook. There was a whole world of people out there who were there to calm my fears, who were awake at all hours of the day and who were there if I needed to talk to anyone. Soon I was posting on these groups about things not necessarily baby related as well as anything I needed about Harry. They became my friends in my phone. The people I turned to first. I shared all of Harry's milestones and they gave me the courage to get out and explore with Harry. I soon made very good friends and we met (and still meet) regularly for a coffee and to take the babies (not that they are babies anymore) for trips out.

If it wasn't for facebook mummy groups I wouldn't be the mummy I am today, I wouldn't be confident in my parenting decisions, to be quite honest I would probably still be a huge mess. But because i am a better parent Harry is a happier child. I still worry that I'm not doing it right but i wouldn't be able to parent without the wonderful mummies, that are just a click away. Thank you Facebook!!

Postnatal Depression

Today's post is all about Postnatal Depression. As this site is about raising awareness I felt that this would be an important post. As a sufferer of PND, I know it's not something that is widely talked about and most women feel ashamed to admit that they are indeed suffering.

I never realised I was suffering, in fact, if it wasn't for Sam I probably wouldn't be here today. I was on maternity leave and hadn't left the house in about 3 weeks. All day while Sam was at work I sat with Harry in his bouncer infront of the TV, curtains closed and no lights on. It was horrific looking back on it now but I just didn't have the energy to do anything but change Harrys nappy or make his bottle. I was scared to leave the house on my own in case something happened and Harry ended up back in the hospital. I wasn't coping at all. I suppose it didn't help that Sam had to go back to work the day after Harry was discharged from NICU so I was doing it all on my own from the very beginning, not that it's Sams fault. We needed the money as he hadn't been earning for almost a month.

I often had thoughts and feelings that Harry would have been better off without me, that I was a terrible mother and maybe I should just leave so he and Sam would be happy. As I'm getting better I know that isn't the case but even now in my darkest moments, i wonder why I stuck around.

I don't talk about my depression with anyone. Mostly not even Sam, although he knows me so well he can tell when I'm having a bad day, I just want to let EVERY SINGLE person out there know its okay to ask for help if they are feeling like that. There is nothing to be ashamed of if  you just arent coping. It's okay.

The Harmony test

What is the Harmony test
The Harmony test - also known as Non-Invasive Prenatal testing or NIPT - is a blood test which can test for various genetic abnormalities including Downs Syndrome, Edwards Syndrome and Patau Syndrome. It is being rolled out slowly in the UK to replace the CVS and Amnio testing usually done after your 12-week scan.
The Harmony test can be taken as early as 10 weeks into your pregnancy and has a false positive rate of just 0.1%. With the Harmony test, you can expect to receive your results within 10 working days.
One of the great things about NIPT it completely eliminates the risk of miscarriage for fetal testing, which with Amniocentesis is 1% and CVS is 2%.
What is Amniocentesis?
Amniocentesis is one of the current procedures used to diagnose genetic abnormalities in an unborn baby. The procedure involves taking a sample from the amniotic sack that surrounds and protects the fetus. It can be dangerous though as a slight miscalculation can cause irreparable damage to the sack resulting in miscarriage.
What is CVS?
Chrionic Villius Sampling - or CVS - is another procedure offered by the NHS currently to diagnose genetic conditions. This procedure involves taking a sample from the placenta and of course carries the risk of damaging the placenta meaning a miscarriage occurs.
What are the perks of having the Harmony test?
Besides carrying no risk of miscarriage there are several other perks of having the Harmony test during your pregnancy.

  1. Is done early as to make an informed decision - There is no judgement here on Raising Harry. We understand that having a child with special needs is a personal choice and feel that by having the test early you can do all the research you feel you need to to make an informed decision and that is exactly why we started this website. It's nothing to be ashamed of.
  2. Can test for other things - With the Harmony test, you can also get what is called X Y testing which means that you can find out the gender of your baby but it also tests for things such as XXY.
  3. Low false positive rate - With being over 99% accurate you can trust the information you are given.
How has the development of the Harmony test affected children with special needs?
The development of the harmony test in different countries has affected the rate of children with special needs born.
Termination rates for downs syndrome
U.K - 90%
France - 77%
U.S  - 67%
Denmark - 98%
Iceland - 100%

But why are the termination rates so high? I think, honestly, it's fear and misinformation. And that is why I wanted to start this website, to show the positives of having a child with special needs.


I am all for the Harmony test, from my personal point of view it is a good thing if having a child with special needs is something you feel strongly about, and the main positive for me is the fact that there is no risk of miscarriage makes this the best thing, and while it is not available on the NHS at the moment if you can afford it (runs at roughly £400 for the testing and  private scan) I would highly recommend getting it.

Dear Harry

This posts will pop up every so often. I was always determined that Harry will know his whole story, from the moment we were given his diagnosis and so I started writing to him. I made him an email address which I will give him when he is older and he can read from the very beginning.
However, I thought it might be helpful to put a couple on here and this one is the very first from the day we got his diagnosis.

Dear Harry,

Wow, what a journey this has been. You were born last Thursday and already your dad and I cannot believe how lucky we have been. Waking up that first morning without you was the hardest thing I have ever done, but knowing that you were getting the best possible care is what has been keeping me going. I can't thank the wonderful nurses who are looking after you enough for what they are doing.
On Friday we met Dr Jones. He told us what he suspected and you had to have blood taken to confirm, and today we got our confirmation. You have Down's Syndrome. Writing those words have been hard for me and I have to be honest, your dad and I cried our eyes out when we had a chance to process the information, but I want you to know that it doesn't change how much we love you. You are our entire world and we just couldn't imagine life without you. I hope that you never felt, growing up, that we have treated you any differently or you have felt that we have loved you any less than we could have because I honestly don't think it's possible to love anyone or anything as much as we love you.

Until next time my darling boy

Mummy xxx


Six Myths about Downs Syndrome

When we first learned that Harry has downs I thought about all the things I thought I knew about it. Turns out I was wrong about quite a lot! Here are some things that people always think about when they hear downs syndrome.

  1. Someone who has downs is always happy – What a load of tosh! People who have downs syndrome are no happier then people who don’t! I can promise that Harry has had as many temper tantrums and hissy fits in his 16 months as other babies in our family’s. People with downs syndrome are just that. People! They aren’t some kind of rare species who only have one emotion. So why do people think that? I honestly have no idea to be honest.
  2. People with downs cant have jobs or live independently – Ha! This is just... Wow. And I’ve lost count of the amount of times people have said that about Harry to me. It really gets me frustrated. People with downs may need a little help, some may even need a lot of help but lets not put them all in one group yeah?
  3.  Children with downs syndrome are born to older parents – When I had Harry I was 23. When I refused the blood testing at 12 weeks I was told it doesn’t matter as I wasn’t at risk anyway. WELL... yeah. You can have a child with downs syndrome at any age. I didn’t want the test because it didn’t matter to us. If it matters to you take the test.
  4.  People with downs syndrome don’t live as long as people without – This used to be true. Not because people have downs, because there was no support. Fifty years ago if a child was born with downs syndrome they were put straight into a home or asylum and refused medical help for any issues. This isn’t the case anymore and people with downs syndrome can live as long as anyone else.
  5. People with downs syndrome are overweight – Again a load of toffee! Some people with downs syndrome may appear slightly overweight but this is caused by the low muscle tone which can be a symptom of downs syndrome.
  6. People with Downs syndrome cannot have children – This one upsets me. Some one with downs syndrome is perfectly capable of having children. Harry however is more then likely infertile due to his Klinefelters, not his downs.
These six points I feel at incredibly important to remember about someone with downs syndrome but the most important thing to remember of course is that they are not defined by their diagnosis just like someone with cancer isn’t ‘that guy with cancer ben’ Harry isn’t ‘that boy who has downs syndrome Harry’ He’s just ‘Harry’ He’s not downs. And he isn’t the amazing little person he is because he has downs. He’s just Harry. Just like I am Kat and you are you. So the next time you meet a person who just happens to have downs syndrome, take the time to get to know them and don’t judge by their diagnosis.

What is Klinefelters Syndrome?

Klinefelters syndrome is a genetic syndrome caused by a male having two X chromosomes, also commonly called XXY or Double X Syndrome. Usually a female has two X chromosomes (XX) and a male has one X and one Y (XY). Having an extra X chromosome does not mean that someone who has Klinefelters is not male because they still have that  chromosome.
Symptoms of Klinefelters include;  
  1. Learning to crawl, sit up, walk and talk later then others - This like downs syndrome is caused by low muscle tone and doesn’t mean that boys who have Klinefelters will never be able to but just may be a little slower.
  2. Quiet and passive personality – Not necessarily true and anyone who has met Harry will completely agree with that!!! However boys with Klinefelters have been known to be quieter and more passive then other boys their age, although this can just be shyness!
  3. Learning difficulties – Issues with reading, writing and spelling. Also boys with Klinefelters are also commonly diagnosed with dyslexia
  4.  Height – How jealous I am of this!! Me with my tiny 5”1 height! Likelihood is though Harry will be very tall!
  5.  Reduced facial and body hair – May be less but may also just develop later.
  6. Wide hips and in severe cases breasts develop.
  7.  Low sex drive
  8.  Infertility
  9. Small penis and testicles

While some males who have Klinefelters will experience all of these symptoms some will have few or none. There is no guarantee and some males go undiagnosed until issues with fertility or other issues.
Health issues are also common with Klinefelters as the risk is slightly higher especially for certain issues such as;
  1. Type 2 diabetes
  2.  Weak and fragile bones
  3. Cardiovascular disease
  4.  Blood clots
  5.  Under active thyroid
  6.  Anxiety
  7. Depression
  8. Male breast cancer

Again none of these are guaranteed.

Klinefelters is incurable, however it is manageable with things such as testosterone therapy (usually given vial injections) to help the body with its lack of testosterone physio therapy to help with muscle tone development and breast reduction.

Not much more is known about Klinefelters, and Harry having both Klinefelters and Downs is incredibly rare (we worked it out as chances of having a child with both at my age being about 1 in 4.5 million) and so not much is known how it will effect Harry is the future and so we are just taking  everything as it comes.


What is Down's Syndrome?

The NHS describes Down's syndrome as the presence of an extra copy of the 21st chromosome in a developing babies cells. This starts when the egg or sperm is developing and accidentally takes two of the 21st chromosome. When it then joins to make a baby there are three of this chromosome instead of two.


However, most people are unaware that there are three different types of Down's syndrome;
1.     Mosaic Down's Syndrome
2.     Trisomy 21
3.     Translocation
And these different types affect in different ways.

Mosaic Down's Syndrome
Someone is diagnosed with mosaic Down's syndrome when not every cell has an extra 21st chromosome. This is considered the mildest form of Down's and some people have been know to not be diagnosed until adulthood due to lack of symptoms. Mosaic Down's usually shows as learning difficulties rather then physical or developmental difficulties.

Trisomy 21
Trisomy 21 is the most common form of Down's syndrome, also referred to as Standard Down's. Trisomy 21 is when every cell has an extra 21st chromosome. Affects of this type of Down's syndrome varies in person to person, with some having more physical and some having developmental while others can just show as learning difficulties again,

Translocation
Translocation Down's syndrome is when every cell has an extra 21st chromosome however some chromosome material is re-arranged. Usually one of the 21st chromosomes is attached to another chromosome instead of being separate. This type is the only type that may have been passed from one of the parents meaning if you have one child with Translocation any children you may have is more then likely to have it.


Having a child with downs syndrome can sometimes feel like the end of the world when you first get the diagnosis. Its completely understandable. Personally we had decided that we didn’t want any kind of testing during pregnancy and so had what is called a ‘birth diagnosis’. For us we went into almost a mourning period. Not because we didn’t love Harry, I honestly think that we couldn’t have loved him more, but mourning for the child m told we thought we were having, and that is a  completely normal reaction to that kind of news. It’s okay to be upset about the diagnosis. Its okay to cry and scream. But I promise you, it gets better.

Birth Story

Harry's birth story seemed like a fitting first post on here. Bear with me because it was written months ago. More posts to follow every Monday and Friday!! Leave us a comment to let us know what you think of the website!
Thanks guys!!

It was finally happening. The moment I had been waiting for almost nine months. I was finally in labour.
The thoughts that run through my head as I settled into my delivery suite ready to bring my son into the world were not full of fear or nerves but pure anticipation. I couldn't wait to meet him and after six days of pre-labour with painful contractions and no sleep I was eager to get this baby out of me! Sam, bless his heart, had been with me every second of those six painful and exhausting days and was just as excited as I was for it all to be over.
My labour, once in what they call 'active labour' lasted just under ten hours, however I was extremely lucky in the fact that I was only pushing for a mere twenty nine minutes before he made his appearance, We knew we were having a little boy and had already agreed on the name Harry Alexander David for him. Harry for Sam's granddad, David for mine and Alexander because it tied his names together perfectly.
After my extremely quick delivery I had been expecting to have my skin to skin contact with our little boy, but unfortunately this was not to be. Our baby had been born with difficulty breathing and was rushed into NICU (neonatal intensive care unit) straight away. Sam was lucky enough to see him and a kind nurse took some pictures for us to send to family and friends. I didn't see my son for another two hours, once I was all fixed up.


That first night is a blur to me now. Its that next morning that I remember most. Waking up for the first time in nine months not pregnant and also not having my beautiful boy there was the hardest thing I had every had do live through, I cried for hours until Sam came back to see us. When I saw Harry he was covered in tubes and wires and looked so fragile I could barely touch him for fear of breaking him even more. It's safe to say I blamed myself for what was happening to him and in some respects I guess I still do.
I spent the first week of Harry's life on the transitional care ward in the hospital, which drove me crazy as I had never spent time in hospital before and as far as I was concerned there was absolutely nothing wrong with me, labour had been easy and I was recovering well. The only upside was I was literally seconds away from Harry and could visit at anytime. During that week I was often found walking between my room and Harry at all times of the day and night. I just couldn't bear to be away from him. 
It was on Harry's first morning we got an update on his condition, and some shocking news, Suspected downs syndrome. We had known it was a possibility of course as it is with every pregnancy but we never thought it would actually happen to us. I had done everything right in my pregnancy, giving up smoking as soon as I found out, not touching a drop of alcohol, even avoiding certain foods like the plague. These were the thoughts running through my mind as I heard those words, I just couldn't grasp that none of that mattered. They took blood for genetic testing to confirm their suspicions and waiting for those results were the most confusing days of my life. It took me some time to process the information as I was more concerned about Harry's breathing as he was still hooked up to oxygen and struggling on his own. When I finally realised what was happening I had just one thought on my mind... Why us? 
It took me a long time to stop blaming myself, and the truth of it is there is nothing you can do to prevent a genetic syndrome. It just happens.

Have You Read...?

Where It All Started

Birth Story

Harry's birth story seemed like a fitting first post on here. Bear with me because it was written months ago. More posts to follow ever...