• Rhona Cullinan

DOWN SYNDROME

Molly is my fun, fabulous, cheeky, fashionable dream daughter…oh yes and she has down syndrome!



We found out at our 9 week scan that Molly had a serious heart condition called Tetralogy of Fallot – a condition which is highly associated with down syndrome. We decided against the amniocentesis as nothing would change our choice to have this baby. We decided there and then to accept our baby with whatever conditions she had.


The pregnancy had many ups and downs. I had to be scanned twice and sometimes 3 times a week to check her growth and heart condition. I also became insulin dependent with gestational diabetes so had regular checks for that too. At approx 24 weeks Molly started to decline and she stopped growing – it was a very worrying time. Eventually they decided to give me steroids to try and boost her growth otherwise they would have had to induce me! That’s when her nickname The Warrior came to pass – Molly took the steroids and bounced back to normal growth and thrived after that.


At 39 weeks we went for a scheduled induction – however it started to go wrong once I started to push – everytime I lay on my back I would pass out – as though Molly was cutting of my supply. Her sats started to drop and with full dramatics like a scene from ER we were rushed with doctors and nurses screaming through the corridors into an emergency section.


We had a huge team waiting to take her – cardiac, diabetes and down syndrome teams. We had been told that when she was born she may be blue and possibly wouldn’t cry and knew she would go straight to ICU to be checked. So, as determined as Molly is she gracefully entered the world bawling her eyes out and needed no oxygen or help. On looking at her we instantly knew she had down syndrome. To be honest we were so glad she was alive the fact that she had it really didn’t matter.


I got to hold her for about 5 mins and fell immediately in love! I had an instant connection as she gazed up at me. When she was then taken away from us I remember a lovely silver haired nurse coming over to me – she put her hand in mine and whispered in my ear – You’ve been blessed – you don’t know it yet but you have!!! Congratulations!



I remember lying there while they were sewing me up and thinking why would she say that – what did she mean? I expected pity and wondered how I was going to break the news to everyone? I knew absolutely nothing about down syndrome and didn’t do a lot of research about it whilst pregnant as I tried to convince myself that she wouldn’t have it.


So I started researching online – facebook groups - information pages and a little booklet I was handed to read. To my absolute surprise I actually couldn’t find many negative comments about having a child with DS – they were all lovely stories about achievements, unconditional love and amazing bonds. So that was fairly much the attitude I decided to take! From that day forward I introduced her as Molly – nothing else just Molly.



She lay every day gazing into my eyes and the love we felt from her was unreal. I wanted to show her off to the world so I set up a facebook page for her. Initially it was just to put up photos of her for family and friends – but her page quickly grew and more and more people joined – all wanting to follow her journey and see her photos. She is photogenic and after two boys I loved dressing her up in bows and tutus. Within weeks she got picked up by some online clothes and hair accessory companies and I was contacted to ask could she rep for them. I was blown away! My little girl was now modelling for 5 international successful brands and was being treated just like all the other reps.


Molly was a normal extremely happy, content baby… In fact she rarely cried. We had some problems trying to get bottles into her as she suffers from low muscle tone which makes it a bit harder for her. She had many sessions in physiotherapy, occupational therapy and we even started to learn baby signing in speech therapy. That was probably the hardest part of her early stage as it took up a lot of time but otherwise Molly was by far the easiest of my 3 kids.


At 6 months old Molly had her first open heart surgery – it was a terrifying time to be honest. Handing your limp baby over to the hands of surgeons is something no mother or father should have to do. However we were blessed with some of the best doctors and surgeons in Ireland so we felt confident. Molly's first surgery didn’t go completely to plan as she needed to grow a bit more in order to give her heart a proper chance. They put in a BT Shunt and rescheduled surgery for another 6 months time.


Her second surgery was a complete success and she was given the all clear age 2 although will be continued to be monitored – Hopefully she won't need anymore surgeries in the future.

Molly continues to thrive since her surgery and her character has really grown. She has an award winning smile and just wins the hearts of everyone she meets. She is music mad and loves dancing and watching herself in a mirror!


She is still behind physically – at 2.5 years she has only just started to crawl and still finds it hard to put weight on her legs. She has a couple of words but does lots of signs and is quite good at getting across what she wants! Her main problems are around food – she won't touch finger food whatsoever so that’s what we are working on now – walking talking and eating! But she will do it all – just in her own time. Other than that she is generally a very happy content baby who loves music, loves watching peppa pig, giggles when her big brother dances for her but can throw a good ole strop if she doesn’t get what she wants! What more could you want?


Down syndrome has taught me a lot of things – unconditional love, appreciation of all things that we take for granted with typical kids, patience to let Molly do things in her own time and determination – to change the way the world sees my child. I've learned to slow down and enjoy every single milestone with great celebration! A child with down syndrome has the same feelings and wants as every other child – they have the same emotions but are generally very good natured – but don’t think they can't throw a wobbler when they want – trust me they can!


I share Molly's story and journey (along with her little big brother Joshua who is 4 and has Autism – they are inseparable and get up to lots of antics) with thousands of fans on Instagram and facebook– the good bits and the bad bits and it's so comforting to see so many people accept Molly as Molly – not judging by the fact that she has down syndrome. If I could change anything it would be to go back to my pregnancy days – I would enjoy the pregnancy more, look forward to having a daughter, know that down syndrome is simply an intellectual disability meaning she’ll do things a little slower than other kids. I would have looked at the advantages not the negatives and looked forward to having a child like any other with just different ups and downs. If only I knew how Molly was going to completely change my life – for the better!


Earlier this year I was awarded Woman's Way “Inspirational Mum of the Year 2019” and I intend to use it to help change perceptions, create awareness and to educate!



Molly is now a little celeb in the Down Syndrome world – with many tv appearances, magazine and newspaper articles and is now also signed to Andrea Roche Model Agency as the first commercial model with a disability. Most recently Molly was proudly chosen as the Irish Ambassador for Nothing Down – a world wide organisation promoting awareness and acceptance of Down Syndrome. This year our campaign will be Dear Doctor – a campaign to change the way doctors tell new and expectant parents that their child has down syndrome – to prepare to grieve a bit for the child they thought they were expecting and then to push that aside to make way for the child they never knew they always wanted!


So that day when that Silver Haired Nurse said to me – You are blessed – I didn’t know then what she meant then but I sure do now – Yes I am blessed – I love that Molly has Down Syndrome - I do believe I'm the lucky one to have been chosen as her parent! There is nothing down about Down Syndrome – and there is certainly Nothing Down About Molly !!!


Rhona xx


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