Life With A Little Extra – Down Syndrome Is Just A Diagnosis


News Parenting & Family Advice | by | 26th Jun 2017

Theo smiling for article Life With A Little Extra - Living With Down Syndrome

Our guest blogger Yasmin is mum to a 19 month old boy called Theo. Theo has Down syndrome and has been through a number of surgeries to correct congenital heart defects.

Yasmin runs Theo’s Diary, a blog and Facebook page aiming to spread positive awareness and acceptance. As well as working part time as a swimming instructor she is also studying a Media, Culture and Journalism degree. This is her story of life with Theo.

A tough pregnancy

At nearly 7 months pregnant and just a day after my baby shower, my partner left me. Pregnancy for me had certainly not been easy. I had suffered with really severe sciatica and spent almost a week in hospital that summer because of various different complications. After the continuous lack of growth of the baby and after attending a family funeral, I was ultimately stressed out and wanted my little boy here already, safe and sound.

Throughout work one evening, when I was 37 weeks pregnant I felt a dull ache in my back. That night, on my way home from work, I picked up my hospital bag so I could get my hospital stuff together for babies arrival. At 3am I was woken up by intense sharp pains across my back and knew that was it.

After a traumatic labour, due mostly to the hospital’s persistence and blatant refusal to give me any drugs, including gas and air to help ease the pain, my little boy Theo was born screaming, in a birthing centre at 9:13am.

‘Something was off’

You can call it Mother’s instinct but during pregnancy I had felt like something was ‘off,’ and the moment they gave him to me those feelings didn’t change. At my 20-week scan they had struggled to get all of his measurements and he was always 4 weeks behind in growth. Despite these factors, and also a lot of other problems, these all went ignored and weren’t checked again, as no other scans were ever scheduled.

Theo had bright purple hands and feet, the same colour as my dressing gown. He weighed just a tiny 5lb 8.5oz. The most significant thing to me was his total lack of muscle control. I have lived with 4 younger siblings, so do have some knowledge as to how strong new-borns usually are. His glaringly obvious weakness kept flagging a warning in my head. I wasn’t the only one who noticed this, my best friend had noticed just how floppy his head was when he tried to breastfeed. That was completely unsuccessful. He also had extremely thick skin on the back of his neck, which didn’t seem quite right. Since the midwives had not mentioned any of these things to me as unusual after his check, I had assumed all was ok. It was ok… at least for the next 5 hours.

Diagnosis

The day Theo was born, he was diagnosed with Down syndrome. What may have been upsetting to most was more of a shock, but also mostly a relief to me. It had confirmed my suspicions and honestly I didn’t care I had suffered months of worry and stress. He was here and that was that. I just wanted to go home with my new baby. I wanted to live in the now and supposedly ask questions later.

After being rushed to a hospital with consultant’s we had a week’s stay in hospital, because of poor feeding and jaundice. Theo was discharged with a confirmation of Down syndrome through a blood’s test. He also had a much more upsetting and devastating diagnosis of congenital heart defects.

The support of a blog

Theo was the most perfect tiny little bundle I had ever seen in my life. No diagnosis would ever change that or limit his achievements and success. I wanted to show this to the world and that’s when I created his blog and Facebook page, Theo’s Diary.

On February 1st 2016, Theo was admitted to hospital with heart failure. He spent the next 2 months on life support, sedated and slowly slipping away from me. My blog and my page were my escape and support network, especially when I felt like things were hitting a dead end.

Going through surgery

Theo had a very successful open-heart surgery in March 2016 to repair his heart defects, much to everyone’s surprise. I spent 8 hours of my life that day not knowing whether I would see him breathing again. I have never experienced anything so painful as feeling like I was going to lose my child.

After his surgery he also had a battle with respiratory failure because of ventilation damage, bronchiolitis and granuloma’s on his vocal cord. He eventually left hospital and returned home to me in the middle of May the same year.

‘Theo is not his diagnosis’

Theo has taught me so much. He has taught me patience, strength, gratitude and most importantly how to unconditionally love.

You see Theo is not his diagnosis, he is not Down syndrome. He is not an item of clothing and does not come with a label. Theo is a little boy with a little extra chromosome. Instead of having two copies of chromosome 21, Theo has three. Theo is a son, a nephew, a grandchild, a cousin, a great grandchild and so much more. He is happy, he is grumpy, he is a fighter, a heart warrior, an inspiration. Lastly, after all of these, he is a boy who just happens to come with a little extra.

Life with a little extra

It may mean extra hospital appointments, extra support and some extra financial aspects. However, in hindsight it just means I get all that extra time to spend with him, extra time to learn with him and love him. In fact, monetary wise, because I am so aware and knowledgeable of Theo’s specific needs, I often find myself buying things that don’t go to waste.

Life with a little extra has given me back time, patience and taught me that I can learn from someone who is only a fraction of my age. The truth is in all our difference’s, we’re not really that different. The difference’s that he share’s are only to be celebrated because they are largely positive. He has a capacity like no other to love and charm everyone around him. His smile lights up the darkest day. There aren’t many people who can say they grab the attention of a whole room, let alone inspire thousand’s of people across the globe.

Different can be scary, but we are all different. Theo is here for a reason, as are so many others. His diary is to support and spread awareness and most importantly acceptance. A diagnosis does not define someone. His diary is there to challenge negative stereotypes and stigmatism around people with his syndrome in the media. It’s reality. It’s life with a little extra.

Thank you to Yasmin for sharing her story with us. If you would like to share any of your experiences as a parent then feel free to send us an e-mail at info@familypoint.cymru where we can talk through how to turn your story into a guest blog for FamilyPoint Cymru.

FamilyPoint Helpline

FamilyPoint Helpline graphic for family information

If you feel you need to talk to someone about this issue or any other problems your family is having then call our advisors on the FamilyPoint Cymru helpline. The helpline is open 9am – 5pm Monday to Friday. They can help you to find organisations that can help.

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