A Different Journey: The journey of a mum of a child with Additional Needs

The next story in our Journey to Parenthood series comes from Michelle, a mum of a child with additional needs. Her daughter got diagnosed with a rare genetic mutation of the Med13L gene. From the initial elation of hearing she was pregnant to the news following her 12 week scan, she shares her very moving and different journey to motherhood with us. It’s a story that will inspire you to see the many obstacles in life in a different light.

Throughout our series, we are exploring various paths to parenthood and the journey of parenthood itself. Showing different perspectives of how there is never a straight-forward route and going through tough times, especially as a Mum, can be completely overwhelming.

Michelle and daughter

The Beginning

Oh, where to begin with my story? It’s a tale that, even 10 years on, keeps surprising me with new twists and turns. 
I’ll start at the beginning. It was early December 2008 and my husband and I were excitedly travelling from East Lothian to Livingston for a private 12 week scan with nuchal translucency testing for our first pregnancy. We felt elated hearing our little baby’s heartbeat for the first time and on our way home excitedly chatted baby names, idealised what kind of parents we’d be and how we’d decorate the nursery.
The following week I received a phone call at work from the lab who’d done the testing with the devastating news that they thought there was something seriously wrong with our baby. If it wasn’t Down’s Syndrome, they were convinced that the baby would have significant problems, and we should consider terminating.
Fast-forward a couple of days after many tears had been shed and the wonderful maternity unit staff at the Royal Infirmary in Edinburgh had managed to calm us down and make us see that all may not be lost. We had an amniocentesis to get a fuller picture, which ruled out Down’s Syndrome, and further scans
revealed that the baby, a girl, had a hole in her heart. The cardiologist told us to relax and to try to enjoy the rest of our pregnancy.

Tilly as a newborn

She was due on the 4th July and on the 30th June I went into labour – a long painful labour at that! Our daughter was born unconscious at 10pm on 1st July but after being resuscitated briefly was brought back to us by a smiling midwife. She pointed out that she had talipes (previously known as club feet) but it was nothing to worry about. We had named her before she was born as the meaning of the name had resonated with us as a result of the journey we’d already been on – Tilly, meaning “Mighty Battler”. But little did we know that was just the beginning of her battles.
A roller-coaster journey ensued almost as soon as we returned to the ward. She refused to latch on to breast feed, she was curled up so tightly and looked incredibly sad to be out into the big world. She barely cried. A consultant visited us the next day and took us into a side room to share the news that (once again) he thought there was something seriously wrong with her. He highlighted her dysmorphic features – her small eyes, low set ears, long fingers, talipes – and expressed concern that she didn’t have a sucking reflex as she still hadn’t fed from me. He told us there would be numerous tests to be undertaken, but he was convinced that there was definitely something wrong. Once again, we broke down and were absolutely devastated.
One of the midwives convinced us to try her on a bottle of formula, just to prove to the consultant she did have a sucking reflex and to avoid her being admitted to the Neo- natal ward. We put the rubber teat to her mouth, rubbing her lips with it praying that she would attempt to suck…..and she did! Only a little but enough to convince him to let us go home.
What followed after that was extraordinarily stressful as on top of multiple hospital appointments each week, we had a little baby girl who mostly refused to feed. She was tiny and hardly put on any weight – but we were under pressure to get her high calorie milk into her as she had to be bigger and heavier in order to get heart surgery to close the hole in her heart. However, at 11 weeks, mummy instinct kicked in and something felt wrong….a phone call and subsequent emergency appointment with her cardiologist revealed that she was in heart failure. Two days later we were in Yorkhill hospital in Glasgow for life-saving open heart surgery. I’ve written about that time in a different blog because it was so intense.
The surgery was a success and our little battler recovered super-fast from such a massive operation. Disappointingly, her feeding pattern didn’t improve and it was a constant battle to get her to feed – a pattern that continued until she was around 4 years old when, after we both attended a sensory food for fun course, she slowly started to eat a little more. A pattern that thankfully continued to improve each year.

Tilly & Michelle nowRather than turn my story into a novel (which it could well be!), I’ll let you know where we are now. 

My Tilly, my world, is now 10 years old. She has many, many wonderful qualities. Her beautiful smile, her infectious laugh, her cuddles, her determination and strong- mindedness (read as stubborn-ness!). The strength that my amazing girl has shown to overcome so many hurdles in her 10 years on this earth is nothing short of astonishing. But… I hate that I have to write that word, but there is a but. She isn’t now on a typical journey. Her brain isn’t wired the same way as her brother’s (a wonderfully kind, smart and funny boy who was born in 2012).

Although she finally received a genetic diagnosis 3 years ago (a rare genetic mutation of the Med13L gene), we still don’t really know how her brain is wired, or how it will be in years to come – but we do know that the dream of her being able to live independently is pretty unrealistic. 

She doesn’t approach life or the world around her in the same way that the rest of us do. And because she’s locked in a very silent world, trying to make sense of her world can be really, really tough. It’s not just that she can’t talk, or wears nappies, or that she has autism, or that she has a significant learning disability but the sensory input she gets from visual, auditory, tactile, vestibular (where her body is in space), proprioceptive (what her body feels from the world around her), is different to what we feel, and take for granted. Her brain doesn’t process sensory input in the same way that ours does. It affects how she interacts with people, approaches the environment – in fact everything that she can hear, see, touch, feel.

Up until around 2 years ago, I was pretty much her full-time mum, carer and therapist. My husband was the one going out to work every day so my whole world revolved around her (and her brother) as I felt it was purely my responsibility to care for her, teach her how to grow and develop. She went to a mainstream school with full-time 1-1 assistance – but even with that, I was on top of the staff all the time, checking how she was, what she was doing, telling them to do this/not to do that etc. Yep, I was one of ‘those mums’!

But once my son started school, and we managed to get agreement that Tilly would start a specialist school, I realised that I needed to look after me more. In fact, I decided that I wanted to use my brain again and get working again (I’d walked away from my marketing career when Tilly was 3). I investigated lots of options but the one I kept going back to was a Social Media Management course with Digital Mums. It meant that I could utilise my marketing background with specific social media training to hopefully one day start my own business.

The Present

I graduated from the course in September 2018, set up my business Embrace Social Media, then was approached by first client in the October. It’s been pretty non-stop since then and is going from strength to strength as I’m also now learning the complicated art of Facebook and Instagram Advertising Strategy to add to my list of services. Tilly & Michelle 2

Being a mum, and particularly a mum to a child with significant additional needs, plus running my own business is bloody hard work – but it was the best step I could have taken. I no longer feel like I’m the only one who can look after Tilly, as I have a small but perfectly formed army around me to help her. She gets to spend time with some amazing people who add a different element of joy to her life, and I have found myself again.
I have a son who is absorbing everything in the world around him, so for him to see that his mum is strong, motivated and independent enough to run her own business to help support our family is so, so important to me.

Support Recommendations

For support with congenital heart conditions: https://www.heartline.org.uk/
For support with rare genetic conditions: https://www.rarechromo.org/html/home.asp
And for support as a Special Needs parent connect with Facebook groups such as Global Development Delay UK which was great in the early days when we were dealing with her symptoms/delays rather than a specific diagnosis.
Have you enjoyed reading Michelle’s Story? Then you might like to read Maxine’s story too. Her daughter, Sophie, was diagnosed with Down Syndrome at birth, which came out of the blue to their family. She shares an honest account of her journey of becoming a mum, how she felt at the time of Sophie’s birth and the unexpected joy that her life now has. Click here to read the full article.

If you can relate to this story and would like to connect with other parents in your situation, our Dribble Facebook Community is full of advice, support, chat, events and much more to meet other Scottish families. We also try to take the online offline too by arranging some Dribble events, including our monthly Breastfeeding Meet-up.

Remember you’re not alone.

Click here to join us for a bit of natter!

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