Life as a surgery Mum with HaNDL Syndrome

Life as a surgery Mum with HaNDL Syndrome
Imagine that you have three young children; by the time the youngest is only 18 months old, you’ve had six abdominal surgeries and have developed an invisible chronic health condition known as HaNDL syndrome which basically leaves you feeling like a stroke victim. Doesn’t sound like much fun hey? Well, this is exactly what life is like for Sami Letran. Read on to learn more about this amazingly resilient woman!

Who was Sami before she became a Mum?

I was a Beauty Therapist. Since my teens I’ve been a passionate person. I decided I wanted to study beauty therapy when I was about 16 so I went to tafe courses at night and did my highschool studies during the day. By the time I turned 17 I was studying my diploma of beauty therapy full time and went straight in to work at a salon at 18. I had a 10 year long career in the beauty industry, mostly working as a beauty therapist but the last few years of working before I took a break to start my family I had a job as a beauty sales rep. / trainer. It was an out on the road job. Visiting salons and running staff training. I loved it! My favourite role in the industry by far.

How old are your children and what is one thing you adore about each of them?

I have three children. Savanah is 6, Logan is 4 and our 3rd born wild child Stevie is 2.

Savanah has a very kind and caring nature. She draws very expressive drawings and I love to see the world in her eyes.  She’s drawn me as a super Mum soaring through the air with a cape on quite a few times and I absolutely love that she sees me that way.

Logan is a very sweet boy. But he can come out with the most offensive and inappropriate one liners. In those moments I’m usually feeling equally amused and mortified. At his 2yr old check up as we were leaving he leaned in to say goodbye to Kerry our lovely nurse and said “Bubbye bitch”. At the time I wanted the ground to swallow me up but now when I tell that story I can’t help but laugh.

Stevie, Stevie, Stevie. Where do I start with this little fire cracker. She is a free spirited, hilarious kid. Stevie pushes boundaries to the absolute limit. I never know what mischief she’ll get into next. She has her own Instagram hash tag #shitsteviedoes. On my birthday this year she emptied a whole bag of Epsom salts upstairs and on Mothers Day she hurt her toe and ended up in ED having her whole big toe nail come off. That is the type of shit Stevie does!

What is something about being a Mum that drives you bonkers?

The exhaustion. 

Especially during what I call “rush hour” between 4pm-7pm when I am already so tired I find it really tough. Coming home with 3 tired, cranky, hungry kids is hard work. Wrangling them all while I get dinner served up, bath time before they hop into bed and then getting each child down to bed in itself can be a whole other battle. 

You call yourself a “surgery Mum”, can you share with us why and your surgical history?

I feel like I’m a ‘surgery mum’ because I have had 8 abdominal surgeries since becoming a mum in 2013. My children were all born via c-section. In between births #1 & #2 I had a laparoscopy to clear blood clots out of my uterus. Due to uterus issues after suffering from ‘irritable uterus’ throughout all 3 pregnancies I decided to have a hysterectomy.

When baby Stevie was 12 weeks old & I was 30 I had my hysterectomy. My cesarean scar was opened up for a 4th & final time & only my uterus was removed. Unfortunately I am just one of those people who are prone to adhesions forming (scar tissue) which are caused by my multiple abdominal. surgeries.

In April 2018 I had my 3rd c-section, the hysterectomy was July 2018 and sadly by June 2019 my first adhesions had formed and twisted my bowel. After a grueling few days I had emergency surgery to untwist my bowel. They also discovered my fallopian tubes needed to be removed so they came out too. A few months later November 2019 I was again in agony caused by adhesions. This time was the most scary as they thought I had a bowel obstruction so was once again rushed off for emergency surgery. It was treated as a very serious case with a large medical team on the day all working quickly to get me into surgery. My bowel wasn’t obstructed by they found adhesions on my colon. To prevent any appendicitis confusion in the future they removed my appendix during that surgery. 

So now I am down a uterus, fallopian tubes and appendix. Hospital staff including cleaners came to visit me during on my last stay. I remember saying to my husband “I think they wanted to check I hadn’t died” because of the awful state I was in when I arrived.

I read a blog where you are reminiscing over old photos and you can literally point out how poorly you were feeling in every photo.
Does that make you feel sad knowing how deeply you were struggling even in the “good” times?

When I open up these memories I’m right back there. It’s very real, raw and vivid.

It breaks my heart to look back at those times and know what a dark place I was in. But it also makes me really proud. I still managed to give my kids fun, happy birthdays and a special Christmas Day. I made sure Stevie was baptised in her big sisters baptism gown and turned my love and devotion to my family into strength to be there for them. Doesn’t mean that I enjoyed it, but it did bring me much needed joy to see my babies happy.

You live with HaNDL Syndrome, I've never heard of it and I know I wouldn't be the only one. Can you explain for us what what HaNDL syndrome actually is?

HaNDL Syndrome is a neurological condition. And as I’ve been told many times before, there is just so much they still don’t understand about the brain. So I live with many unknowns & there is no known cure. But I do take migraine prevention medication. I have ended up with HaNDL Syndrome as a result of suffering quite a few Complex Migraines around October 2018. A complex migraine is a migraine with the usual expected headache but also neurological symptoms which are almost stroke like. 

My eyebrow will droop, I experience tingling and numbness in my limbs down half of my body, speech can be slurred and I get confused. My migraine headaches are well managed now. The HaNDL Syndrome is the lingering neurological symptoms. The right side of my body is very weak. My right leg is often tingly and my right foot often feels numb. The tingles at times can feel like a painful burn. My right hand grip is terrible which means I often drop things and have burnt myself dropping trays as I take them out of the oven. Simple things like doing up a button, holding a knife or threading a needle are very difficult for me because I am right handed. 

When my HaNDL symptoms flare up the only one visible is my right eyebrow droop. I’ll slur my speech and mispronounce words and feel forgetful and confused. I’ll walk into my en-suite and not know why I’m there, it takes me a minute to figure out if I’ve gone in there to use the toilet or what? Fatigue is the symptom I hate most of all. Many days I’m so exhausted I feel like an old lady. Having 3 young kids keeps me very busy and active. When I feel tired I am EXHAUSTED. I may burst into tears at any moment exhaustion. That is the most upsetting symptom to live with.

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Do you ever get called a hypochondriac or told to “toughen up?”

I’ve never been called a hypochondriac. I won’t go to hospital unless absolutely necessary. I’ve turned up to my Neuro Specialist once with a very obvious eye droop and speech slur. He didn’t finish my appointment he sent me across the road to the hospital for treatment.

With my scar tissue adhesion issues I’ve put up with the pain til I could no longer walk. I’ve hobbled in for an ultrasound and cried tears of pain throughout the whole thing and then threw up at the end. I don’t think medical professionals have ever doubted my pain or discomfort.

As I write this up now I am 18 days post op. This May I once again had adhesions removed from my colon after 4 days of agony. I had surgery the day after Mothers Day.

What would you say to the Mum who is struggling with her health and feels like she is letting her kids down?

You love your children and that is enough. YOU are enough. Kids are so unbelievably tough and resilient. They just want to be loved. They want to feel loved by you, their Mum. You’re not a shit Mum. You are doing the best you can in your current circumstances. Don’t put so much pressure on yourself. You are not less of a Mum because you’re unwell. Your childrens love is unconditional.

How big of an impact has your health had on your relationship with your husband?

I am very lucky to have such a devoted husband. We’re both 32 and have been together since we were 15. Over the years our love and connection has grown and once all 3 babies arrived we’ve become a super tight team. Communication is important and when we can we make the effort to spend quality time together just the two of us. But that doesn’t mean it isn’t incredibly difficult each time I’ve had a surgery and am down and out for weeks in recovery mode. 

My husband is forced to carry the entire family load which is normally a shared role. He is the one working full time, caring for the kids, doing all of the physical jobs I can’t manage and it is very stressful. His job can’t be put on hold as he’s self employed and it’s almost cruel that the demands of running a household and raising 3 young kids don’t let up at all because I’ve had surgery. I really feel for him during my recovery and I do have a fear of resentment setting in. I shouldn’t feel this because he is an amazing husband and incredible hands on father. But when I’m upstairs in bed resting and he’s dealing with the chaos and mayhem that is our normal family life I can’t help but feel chest crushing guilt.

We both feel the strain of the physical distance between us while I recover. We miss the intimacy and affection while I’m recovering. My whole abdominal area is so tender we can’t enjoy our normal embrace at the kitchen sink while I wash up, embarrass the kids with a Mum and Dad dance or just a playful tap on the bum as he walks by me. It’s all of these intimate, fun and affectionate moments we miss most. And sadly recovery can’t be rushed so we’re forced to wait til I’ve healed. Being so in love and devoted to our kiddies is definitely what gives us the strength to pull through together.

You’ve started your own business The Essential Mama Co, tell us about it and the driving force behind it.

The Essential Mama Co, it’s an online store, a space to feel nurtured and shop in peace. Shop for pure, gentle, quality products. Each one hand selected by one Mama for another. The website is also where I blog and share stories so it’s a pretty personal, special place. Very recently I had a gorgeous essential oil diffuser necklace designed exclusively for The Essential Mama Co which was very exciting!

The driving force behind the biz is and always has been my family. My 3 kids and hubby. During my health struggles I found great relief and comfort in Essential Oils. I began sharing my essential oil journey on social media then very organically the store idea blossomed there. I share my Motherhood journey, health struggles and my online store all very openly.

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