Our Journey...so far

In May 2016, I gave birth to my first baby. To say it didn’t go according to plan is a massive understatement! It never occurred to me that I would have anything other than a ‘normal’ birth. By that, I mean, give birth and be home with my baby at least within a couple of days.

That moment should have been the happiest of my life, but instead it was gut-wrenchingly sad. I felt like I’d been hit by a truck. That I had been repeatedly punched in the stomach.

I unknowingly had Group B Strep (GBS) and unfortunately passed it on to my little boy.  It went undetected as it is not routinely tested for. My waters had broken and he was born by emergency C section 27 hours later. He was incredibly poorly. At birth his apgar rating was only 2.  A healthy baby is usually a 7 or above.  There was no newborn cry, he wasn't placed on my chest. He was attended to on the other side of the room, then whisked away to the SCBU (Specialist Baby Care unit). So there I was...not pregnant anymore, no baby and an empty cot by my bed. It is the strangest thing to carry a child for 9 months, talk to him and prepare for his arrival and yet, not get to hold him or even see him when he is born because he is just that poorly. It was so incredibly surreal. I just felt empty and alone.

In the pit of that despair and pain of having such a poorly baby that I hadn't even seen, I had a horrible knotted sick feeling in my tummy because he hadn't cried when he was born. I worried he wouldn't make it....then a doctor came into my room, and  I was told  "I'm sorry but.." I thought I was going to be sick, I thought the next words were going to be...your baby has died ...and from the look that went with the words I felt that they thought that it would have been best if he had, but the words were..we think your baby has Down Syndrome.....

The bottom fell out of my world.

I remember thinking, how unfair...how unfair to make him fight so hard to be alive and then this. I was totally consumed by one thought and that was that one day, I would watch my baby die. That I would out-live my child. I was ignorant about DS and all I thought I knew was that life expectancy was short. I was inconsolable. I began to wonder, 'what next', give the little guy a break! As I am an older mum, I had had a blood test and my 'risk'  (I hate that they call it that!) of a baby with DS was low (1 in 2800), so honestly I thought they were wrong and had made a mistake.

My baby was brought to my room 7 hours later -in the early hours of the next morning - for me to say hello and see you soon as he was being transported to another hospital in the most amazing piece of kit I've ever seen. It resembled a little rocket and was packed full of everything he needed to keep him alive. It was basically a mobile intensive care unit. I could barely see him amongst all the wires and kit. My mum said we needed to give him a name so people could talk to him, so we named him Harry. I said hello and told him I loved him and he had to fight...and then he was taken away. I followed 10 hours later by ambulance - after the epidural had worn off and I was able to walk. Fyi ambulances are not built for comfort! I was holding on for dear life over all the bumps on what felt like an incredibly long journey, feeling like my c/s wound was going to split open at any minute!

On my arrival at the JR, I may have been a bit paranoid, but I felt as though everyone was talking about me and the baby with DS. I felt surrounded by pity faces....

Nurses and doctors talked about Down Syndrome markers that my baby had. I thought they were talking rubbish.  He was so swollen up and puffy you could hardly actually see 'him'. I still thought there had been a mistake.  People said I had been hit with a double whammy and it was just so unfair. I had a lot of I'm sorry's. In hindsight, this did me no favours at all, but at the time I felt it gave me justification for feeling sorry for myself...oh poor me.

Why me? Why us? We should be at home cuddling our little pink bundle but instead we are spending our days standing by his incubator in the NICU (Neonatal Intensive Care Unit) praying that he lives.  These were the darkest moments of my life. In May 2016 I watched my tiny baby fight for his life.

If you have ever had your heart broken, then you will have an idea of how I felt. If you have had a child in intensive care, my sympathies go out to you.  I have felt heart break before, but this was on another level. I have never felt such deep, internal, agonising pain like it.  I never realised how much I could love another person but yet feel so completely helpless. All I could do was express milk, read stories, hold his hand and talk to him. It didn’t feel enough.

Harry spent 38 ½ days in the John Radcliffe (JR) Hospital in Oxford - 16 of those in intensive care.  I felt sick for the majority of those 38 1/2 days.  We were so concerned with getting our little boy well so that we could take him home, that I refused to really acknowledge the Down Syndrome at all.

Neither the staff who delivered the news or those who looked after me after my emergency C section, congratulated me on the birth of my son, instead they said, “I’m sorry” …they were sorry that I had given birth to a boy with Trisomy 21. Those words have stayed with me.  I am not sorry. We are not sorry. As I write this, he is now 4 and it makes me sad that anyone would ever be sorry about our beautiful boy. Looking back now, I am just very sad that what is my only birth story, was ruined by words.

I feel robbed of our moment....of my moment, that I waited so long for.

The only way I could cope was to push the DS to one side and just focus all my energy and prayers on him living. We had a very sick little boy that we were totally in love with and with every part of our being; we were willing him to live. At one point we were advised that we should have him christened. I felt sick to my core, because you know what that means.

It was at night time when I was alone, that my mind thought about the DS. I only did a bit of googling and wished I hadn't. I found nothing positive. I googled DS markers and then scrutinised my baby the next day, but I couldn't see them. Until he was tested, I thought they were wrong. After they confirmed the DS, I still thought they were wrong. The DS went under the radar in all my scans and blood tests. I was consumed by the unfairness that he was fighting for his life and would have to fight for the rest of his life.  I held my baby's hand and looked at his gorgeous little face and I had never felt such sadness simultaneously with such unconditional love. I was so scared for the future.

Fortunately the little guy is a fighter and he overcame one hurdle after another. It was 10 days before I held him. The longest 10 days of my life. When the day came, I was scared - there were so may tubes, what if I hurt him? But oh my, looking into his little eyes just ...wow.

Even though I was surrounded by love and support, there were times when I felt very alone.  Within that little bubble of just getting through each day, we left not only the hospital at the end of the day…but our baby. That is just the strangest feeling. I have never shed so many tears and felt so helpless in my life. I have never cried such stomach wrenching deep tears. I have never prayed so much (even though I don’t consider myself to be religious). I have never before felt that life was so unfair.

Prior to my own experience, I had never heard of Group B Strep.  I think every expectant mother should be told about it and be given the opportunity to be tested. I would have paid for the test just for peace of mind, had I been warned of the risks to my baby. We were lucky, it could have been so much worse.

I am telling our story in the hope that it helps just one person in a similar situation to feel less alone and help them keep going. I wish I knew then what I know now. I wasted so many tears and worried about so many things that never happened.  When I was in hospital crying in despair down the phone to a friend, I was given this advice...you have a gorgeous little baby and he just needs his mum. The rest can wait, just love him and be his mum. That was just the best advice I could have been given and I will be forever grateful.

Harry is an amazing little boy with such a brilliant personality.  Thankfully he has no on-going health issues from his time in the NICU. Not a day goes by where we are not grateful for the amazing care he received. Our lives have been totally blessed by our little boy and I wouldn’t change him for the world.  We love him to bits.

Year One...

This was the hardest....in terms of being a new mum, all the hospital appointments (so, so many), people putting Harry in a box
(not literally), having people talk about 'people like him', people not believing me when I said he could do something (I started taking videos for proof!), being the odd one out, just being in my head.

Years Two and Three...

Watching Harry grow into a little boy was so amazing. Watching him go from commando crawling to proper crawling (18 months old). He didn't start walking independently until he was 2 1/2 (30 months) and he was so pleased with himself. Watching your child succeed at things that come so naturally to other children is so heart warming. Strangers and friends both said to me "once he starts walking, you'll wish he wasn't" and I can guarantee you that is 100% not true. They had no idea of his struggle, his determination, all his little successes... and my pride and love for my beautiful boy.

Year Four and beyond...

I have been told many times by various professionals that "Harry isn't ready for that yet" and I have listened. As Harry is my only child, I have no knowledge of another child's progress to compare his to. I know he is behind. It takes him a long time to grasp things and he doesn't seem to have a 'I'll just try that' or 'I want to do that for myself' attitude yet.  It was a bit of a shock for me to get his development review gradings as part of his EHCP (Education and Health Care Plan). He was nearly 4 and for some things he was rated no older than 18 months.  It amazes me what other kids his age can do. I worry that I haven't pushed him enough. We are just getting to the summer holidays and I have home schooled Harry since the beginning of Covid-19 lockdown (19 March 2020). He has learnt a lot and shown me that he understands a wide variety of things. He is non verbal - although he chats/babbles away for hours sometimes. What I have noticed is that academically, it takes Harry longer to understand what you want him to do. So for example a colour matching task may take a typical child seconds to grasp and minutes to carry out but it takes Harry several sessions of talking through it and showing him what he needs to do before he has a go. It's not that he can't do it...it just takes time.  He may need to be taught in a different way which allows him to communicate his understanding non verbally.

After 'teaching' Harry for the past few months I have decided not to listen to anyone when they tell me Harry isn't ready for something. I think I'll just try it myself with him. As it may take him longer to achieve things, then I think I'm better introducing things earlier not later. He returned to pre-school in Sept 2020 a different child. The wonderful staff there, in particular his key worker Jackie, is amazing with Harry and is giving him the push he needs and encouragement to help him achieve.

He has changed a lot over the last few months and he has grown both physically and mentally. I am so very proud of my little boy. When he was in the hospital fighting for his life, I promised him I would make him smile and laugh every day...and so far we have achieved that. I think of him and my heart bursts with pride. Don't pity me....ever. I am so blessed and so in love with my gorgeous little boy. He is amazing and he is my world.

After nursery, Harry went into reception at mainstream primary school. We deferred his school entry by a year, due to a variety of reasons - his poor start to life, Covid, and being summer born and it was definitely the right decision for Harry. He will stay with his school cohort throughout his primary education.

Harry is now 8 and has just started year 3 at mainstream primary school. He has had the most amazing TA's at school, each have pushed him and encouraged him. It is so important when you have a non-verbal child who signs a lot of things his own way or backwards to have someone who just 'gets' your child and understands him. We have been so fortunate that Harry has had consistency with one of his TA's who we hope will stay with him until he leaves primary school. He is excited to go to school every day and so happy and for that we give Miss Hobson a massive shout out 🥰

Harry can read, he can identify and understand loads of words, he loves phonics and maths (Maths for Life) and his speech is finally coming along.  He has so many singular words which he is adding to all the time and he has even started singing - it's a joy to hear. He loves music and dancing, playing football and watching rugby. He may not be learning the same as his peers but I don't care. He is happy and learning all the time and we couldn't love him more.

I feel I may have waffled on but if you have managed to read it all, then Thank you for reading our story.