Our Down syndrome journey: “We will show you off to the world”

With thanks from Rhona Cullinan who was happy for us to share her precious message to baby Molly who is aged just 20 weeks.

Dear Molly, I still remember the first day I saw you. I remember lying up on the bed while the midwife started our first scan – you were only 9 weeks old.  Your dad and I held hands as we watched a very little you wiggle and jiggle on the screen. We fell instantly in love with you. We were laughing with the nurse about how amazing you were and talking about how we had planned a night away that night to celebrate seeing you – when suddenly her face dropped! With that our hearts dropped. She went quiet, painfully quiet, and then she left. She went to get another specialist to have a look at you – those few mins that she was gone was the worst few minutes of our lives – we looked at each other in complete silence and we instantly knew there was something wrong. Every parent’s worst nightmare! The two nurses arrived back and they scanned you again – and with a saddened look they said yes, they confirmed they could see fluid on the back of your neck – a strong marker for down syndrome and possibly a heart defect! Our hearts were wrenched but we didn’t cry. Instead, we just sat in shock. Yes, we knew we were older parents, but no, we didn’t think this would happen to us. They asked us to come back to see the main consultant the next day as she would confirm all. We told no one and decided to head away for the night anyway just so we could take it all in. That night wasn’t like the night we planned – we sat mostly in silence, shocked, and with a few tears running down our cheeks every now and then. As I looked at the floor beside me I found a little white feather – just randomly sitting there, so I put it between your scan photos where it stayed and is still there- we knew you were being watched over and that you were our little angel. We decided then and there that we loved you and no matter what we had to face we would take it one day at a time and stay positive. They asked us to come back to see the main consultant the next day as she would confirm all. We told no one and decided to head away for the night anyway just so we could take it all in. That night wasn’t like the night we planned – we sat mostly in silence, shocked, and with a few tears running down our cheeks every now and then. As I looked at the floor beside me I found a little white feather – just randomly sitting there so I put it between your scan photos where it stayed and is still there. We knew you were being watched over and that you were our little angel. We decided then and there that we loved you and no matter what we had to face we would take it one day at a time and stay positive. When the consultant confirmed all the next day she asked us if we would like an amniocentesis test to confirm if you had down syndrome or not – we both agreed it would make no difference so we said no.  It was hard to get excited during the pregnancy, to be honest, we didn’t tell anyone about the findings and continued on as normal as we could.  We had regular scans and you did great up until around 25 weeks where you decided to stop growing and we nearly lost you– they gave you some steroids which now I think gave you your superpowers because you fought back hard and went into a major growth spurt surprising everyone.  We had scans twice a week after that so we got to see you more and more. You were officially diagnosed with the heart condition “Tetralogy of Fallot” and they told us you would need open heart surgery at around 5 months and they sent us to meet the team at Our Ladies Hospital who prepared us for what was ahead….possible feeding problems, nose or peg feeds… possible hospital stays and who knows what else. It was a lot to take in but the support and education was amazing so we felt reassured (but a little scared) We had scans twice a week after that so we got to see you more and more. You were officially diagnosed with the heart condition “Tetralogy of Fallot” and they told us you would need open heart surgery at around five months and they sent us to meet the team at Our Ladies Hospital who prepared us for what was ahead; possible feeding problems, nose or peg feeds, hospital stays and who knows what else. It was a lot to take in but the support and education was amazing so we felt reassured (but a little scared) We then found out that you were going to be a little girl and we were thrilled! Tears ran down my cheek - firstly with joy but then with sadness. Maybe if you have Down Syndrome it would be the end of my dreams of mummy-daughter shopping days with you, seeing you falling in love, doing your makeup when you’re getting married and even seeing you getting the job of your dreams. Would that all be lost? I knew I’d have my little girl but she wouldn’t be able to do any of these things. I know now it was selfish and naive but that was the truth of how I felt. You arrived into the world in full dramatic style with a rush down the corridor with nurses and doctors screaming as they performed an emergency section. We thought we had lost you – they thought they had lost me! But no – you arrived determined as ever to prove us wrong…Our Princess Warrior! Your dad was the first to see you – he just looked at me and smiled and said she’s beautiful.  Straight away he could see you had Down syndrome. But you were alive and didn’t need any help with your breathing so we were just so relieved. Suddenly Down syndrome seemed to be the least thing we were concerned about. You had it, so what, we were instantly madly in love with you! The first thing that shocked me was the reaction of the nurses - I expected sympathy and sad pitiful looks but what I got was hugs and cries of “OMG Congratulations, she’s so beautiful" and "You’re so lucky” Our families welcomed you and also fell madly in love with you. Gone were the fears I had of people feeling sorry for us – everyone treated you as they would any other new baby – except you were exceptionally cute and everyone was drawn to you. You went to ICU for two days and then special care for three – then I got you back to my ward where I could cuddle you nonstop as you gazed up at me constantly. Your eye contact was and is something else! You’re so special. Only home about a week and I got a call from the community Down Syndrome nurse – Congratulating us on what was about to be the best journey of our lives! She came out to us and explained all about Molly’s upcoming appointments for early intervention – physiotherapy, occupational therapy, speech therapy etc. When she left I have to say we were flabbergasted, not from all the appointments that I’d nearly need a secretary to keep, but on how positive she was and how she made us feel so special. As things settled I decided to do a bit of research about Down Syndrome – now that we knew it was there it was time to see how hard of a journey we had ahead – how limited would you be. But how wrong we were! I realised you could do everything I imagined – you can go shopping and probably fleece me – you can have a boyfriend and probably obsess over him– you can go to school and do as well as you can – you can get a job – might not be president but you’ll love whatever you do! You can do anything that you want – except you’ll do it at your own pace – maybe a bit slower than other kids but you’ll do it. I also learnt that Down syndrome is simply a learning disability – nothing else – you will feel, you will desire, you will want the same as every typical child – but you’ll just do your way! So Molly I want to apologise – for not enjoying your pregnancy more – for doubting you - for worrying about your future – for trying to limit you before you even start and we promise from this day forward we will push you to be the best you can be – we will show you off to the world, we will treat you the same as your siblings and love you with unconditional love – because that’s what you deserve! Rhona has set up a Facebook page for Molly which she also hopes can help other parents who have just had a baby with Down syndrome. She says

"You are about to become one of the lucky ones - parents to the chosen few, who will make your life not just special but hugely meaningful"