★ WE CAN BE HEROES - me and my Gastroschisis warrior, Maggie ★

July 30, 2021

★ WE CAN BE HEROES - me and my Gastroschisis warrior, Maggie ★

"Is everything ok?" I asked as I studied the face of my sonographer - looking for signs, as I lay on the bed with warm gel on my belly deafening alarm bells began to go off in my head. She didn't take her eyes off the screen, taking what felt like a lifetime to respond. She was cold and emotionless as she delivered the blow. "I believe your baby has a genetic deformity called 'Gastroschisis'" it felt like the air had been sucked out of the room and I felt like I was in that scene from Alice in Wonderland where she spirals down the rabbit hole. 

Minutes before I had been on the highest of highs, excitedly skipping through thoughts of seeing our baby, the baby that Michael and I had been through so much to conceive. Before I'd entered that little room we held hands and nattered about having an ultrasound picture to take home and telling our families the wonderful news.

"How do you think the kids will react, they'll be so excited wont they!?"

We were having the ultrasound done on a beautiful sunny July morning, then we were collecting my two step-kids from school and driving straight to Glasgow for my mums 60th Birthday party. Here we'd tell my extended family our amazing news.

We planned to stop off at our Lake District wedding venue, Storrs Hall, to surprise the kids. I had it all planned out and had even made Connor and Bridget little bags with 'Big Brother' and 'Big Sister' treats inside. Before we'd got in the car that morning I'd added the final touches, little baby books for them to fill in 'what date do you think the baby will be born?', 'what do you think the baby will look like?', 'what brother / sisterly advice will you give the baby?' (Bridget scribbled in hers 'don't eat yellow snow - classic!).

After years of miscarriages, infertility and subsequent fertility treatments this 12 weeks scan meant the world to me, to us. I was blissfully unaware of what lay ahead. 

As I heard the words 'potentially fatal', 'surgery', 'termination' and 'do you still want a photo?' (said in a tone like I wouldn't want one anymore because there was a problem - that made me MAAAAAAD!). I was sent crashing to the lowest of lows in an instant. There's always that little niggle in the back of your mind when you go for a scan, isn't there? But you push it to one side and focus on the happy thoughts. Now my, and every parent's, worst nightmare was a startling reality.

The next 2 hours were tear stained, full of frantic google searches and frustration at the lack of support or knowledge from the hospital. After a lot of 'I don't know a lot about it, let me just get so and so'. We were put in a little room while we waited for someone to come and talk to us, that person never appeared so we eventually left with so many unanswered questions. 

 

From our own research we found out that Gastroschisis was a birth defect of the abdominal wall where the baby's intestines and sometimes other organs are found outside of the baby's body, exiting through a hole beside the belly button. It occurs when a child's abdomen does not develop fully while in the womb. There are no known causes (believe me I've googled them all and lived with the guilt that I did something wrong) but it tends to affect younger mums and teenage pregnancies. 1 in 3000 babies are born with Gastroschisis each year, it is a serious condition that requires life saving surgery straight after birth and an average 6 week stay in Neonatal Intensive Care. There can be complications and long term issues. 

All pretty terrifying. 

"What do you want to do?" Michael asked as we got into the car, both shell-shocked but we rallied like we always do. 

"Let's stick to the plan, I'm still pregnant, the kids are still going to have a sibling, we need to be positive - our baby needs all of our positive energy right now. Let's go get the kids and hit the road". 

And so that's we did. 

(Here's the video of us telling my two step-kids our news, exactly 4 hours after the ultrasound scan)

 

And my Mum announcing our happy news at her 60th Birthday Party (nothing like a hug from your Mammy is there?)

 

So let's go back...

I had always wanted to run my own clothing business, having worked in retail since I was a teenager - eventually working as UK Retail Area Manager for one of my favourite designers, the iconic Vivienne Westwood. However, there was always a reason why it wasn't the 'right time'. 

When Michael and I got together I was at that age where you evaluate your life; what is it about 30?

In all honesty I started my life again when I was thirty. Married and divorced, skint and in a bit of a personal crisis I took a giant leap and relocated to Manchester from Glasgow to be with the man I loved. Everyone thought I was mad. I went through a huge transitional period and was very clear about what I did and didn't want out of life. I knew who and what I wanted to be and wasn't willing to settle for anything less. I wanted love, I wanted babies and I wanted to have a career again - to run my own business like I'd dreamed of since I was little.

Michael and I were madly in love and knew very quickly that we wanted to get married and start a family, but I knew I was challenged in that department with PCOS and suspected Endometriosis, a big old bag of fun! Again, this was another reason why it wasn't the 'right time' to start my own business.

So we jumped on the baby making train together; I took every supplement, peed on countless ovulation sticks, took my temp, had more sex than hot dinners, tried every position, did handstands, changed my diet, acupuncture, reiki, crystal healing, visited clairvoyants, meditated, read alllll the articles...

The months rolled on and nothing.

Eventually after the mandatory 1 year of trying I consulted my doctor who started us on the fertility testing merry-go-round. We had 18 months of appointments, blood tests, scans and my husband bonded with a cup in a dodgy hospital room (with even dodgier magazines). 

It became all-consuming for me and each month that passed got harder. Every time a friend shared their baby news on Facebook, it stung. Mother's Day, brutal. The two week wait only to see 'not pregnant' appear on the stick, crushing. I used to watch 'One Born Every Minute' and 'Delivering Babies with Emma Willis' like a complete sadist.

Michael, sensing that I was cracking up a little, started nudging me towards starting my own business. "Now's as good a time as any, there will never be a 'right time'" he encouraged me me. And so I started the process, I left my job, my safety net and took the plunge.

Perhaps I wouldn't be a Mum after all, maybe it wasn't on the cards for me. If that was the case I'd need to fill my life with other things. 

Electric Eye Apparel became my baby. I launched in October 2018 and it gave me a much needed focus. When I received my first order, then my second, then my tenth I couldn't believe it. It gave me a huge confidence boost and I poured all of my energy into making it a success.

Within my first few months I was making clothes for Kate Moss, Bobby Gillespie, Fearne Cotton and Jane Fonda. My business baby grew and Electric Eye became a huge support to me, in soooo many ways. I became part of a community and I was doing something that a truly loved, I had somewhere to channel all of my frustration and energy. Music has always been a support for me, through the highs and the lows. So being surrounded by music and lyrics with Electric Eye was such a tonic. Nothing will distract me and lift my mood more than playing my tunes LOUD as I blitz through orders on my sewing machine. 

After nearly 2 years of being poked, prodded (can we all just agree that women should be given pain relief for that barbaric 'tube' test!!!) and my dignity long forgotten. Michael and I started to accept that IVF may be our only hope, we were going through the process on the NHS and had an appointment scheduled at Bolton Hospital to discuss our options. I'd researched the shit out of it beforehand, so I was mentally prepared for what lay ahead. This would be our IVF journey. I was ready. We'd have 3 rounds on the NHS with a success rate of 20-35% per cycle. Hope, it was something. 

However, at the appointment we were told that I didn't qualify for IVF on the NHS because Michael already had two children from his previous marriage. Fuck fuck FUUUUUUUUCK!!!! Always read the small print, eh. 

After being told 'we can't do anything for you' after 2 years of trying and testing and trying and testing and TRYING AND TESTING - we had a few choice words. This rule had never been mentioned to us before and with a decent IVF package costing upwards of £12k it was a big blow to us.

Eventually after some persuasion I was given a £9.35 prescription for a fertility drug called Clomid. It was a 6 month course (you can't be on it any longer than 6 months as it comes with a whole list of side effects). Clomid is a pretty brutal drug and it sent my hormones into complete meltdown (poor Michael) but after 3 months of migraines, sickness, mood swings, altered vision and feeling like utter shite - that little stick that I'd grown to hate read 'Pregnant 1-2 weeks'. It was worth it all. I cried the happiest of happy tears as I stared in disbelief. Finally. 

In that instant I became Maggie's mum. However, despite my best efforts to be cool and not completely neurotic I was desperately afraid of miscarrying. I would take pregnancy tests multiple times a day to check if I was still pregnant, then I'd analyse the lines and freak out if I thought one looked lighter than the other "that must mean my hormone levels are dropping" I'd blub to Michael and send him out to fetch another batch of tests to be sure, he was so patient with me - bless.

As the weeks went on and my bump grew I felt overwhelmed with love, joy and utter contentment. Blissful. I loved being pregnant. We had an early 6 week scan done privately and that reassured me. I'd waited so long for this and I felt like my baby was a little miracle, I wasn't wrong on that count. 

So when it came to the 12 week scan I was completely misty-eyed, I practically skipped into the hospital. La-dee-da. Nothing could go wrong, after everything we'd been through this was out happy ending. However, as we left the crushing reality of what lay ahead of us was a big bloody pill to swallow. 

As soon as I found out there was a problem I felt an overwhelming need to protect my baby. Like a lioness I knew we had a fight on our hands and I was going to be the strongest Mama for my little girl. I couldn't be afraid because I worried she'd sense it and be scared too, if I'm strong she'll be strong. No bad juju, good vibes only.

My pregnancy was high risk, I attended the hospital regularly for scans - each one an emotional roller-coaster. We had to check that she was growing ok (she stalled for a long time and was teeny weeny). We checked that everything outside of her stomach wasn't getting damaged (although there was no real way of knowing until she was born) we also had to check that everything else was developing ok. It was such a worrisome time for us, but I felt Maggie's strength - her heartbeat was always so strong like a little train. On one occasion her tiny little hand waved at us on the screen.

On 3 occasions I was offered a termination which was never an option for me, I shudder at the thought. 

Electric Eye became a massive crutch for me throughout this period. As my baby grew, Electric Eye grew. I channelled all of my energy into it, busy hands quiet mind and all that. I was utterly terrified of what lay ahead but I couldn't and wouldn't show it. Electric Eye offered my some normality, a routine, a focus, an outlet. I shared a little bit about Maggie and people were so supportive. I'll never forget that. 

2 weeks before I was booked in for my cesarean section at St. Mary's Hospital in Manchester. I had the most amazing experience with Electric Eye Apparel. After making some sweatshirts for Chris Evans and the team at Virgin Radio I was invited on the show! Chris was a huge fan and had been raving about my wee brand on the radio.

The thought terrified me, speaking in public has always been a struggle for me, but I was a mum now - Maggie's mum, a lioness, I had to be brave and what a cool story to tell her when she was older. So I overcame my fear (and the fear of being so far from my hospital!!) and travelled to London with my bump and my beau.

The day was incredible and one I'll never forget. Chris, Rachel and the team were the loveliest people - it was Christmas time so there were mince pies a-plenty (my craving at the time), live music from The Script and the best festive atmosphere. This day was such a high for me, in the midst of what was one of the most difficult periods of my life. A little light in the dark. Afterwards I was inundated with orders and Electric Eye soared!

Look baby, look what Mama did and you were right there with me.  

The next 2 weeks were my busiest trading period to date. I enlisted the help of a family friend, Libby (who was a Godsend!) and we blitzed through orders. Stitching, packing and shipping around the clock - I had orders coming out of my ears. Oddly, during this time Maggie finally started to grow and gain weight. If I hadn't been so busy I think I would have been a wreck thinking about the birth and everything that lay ahead so this was a very welcome distraction. Again, busy hands quiet mind. 

On New Year's Eve 2019, 15:58 Maggie Aila Rose Horan was born by cesarean section at St. Mary's Hospital in Manchester. She weighed 5lbs 2oz.

I didn't get to hold her, they were supposed to drop the curtain so I could see her being born but instead as I lay on the table she whizzed past my head. Blue. No sound. 

"Go with her, now" I told Michael, who looked like a rabbit in headlights. We'd agreed that he wouldn't leave her side as soon as she was born. I couldn't be with her so he had to leave me and stay with Maggie. At this stage I didn't know if she was alive or well. I lay there, numb from the waist down as they stitched me back together. I watched the clock as tears streamed down my face, two very sweet male anaesthetists sat at either side of my head making small talk, trying to distract me from the obvious hell I was experiencing. 

After what felt like an eternity, I was moved to recovery, anxiously nibbled on a bourbon cream and then Michael appeared by my side with photos and videos of our beautiful, B E A U T I F U L baby girl. Teeny, pink and utterly perfect. I still remember the first photo I saw of her, a close up of her face; eyes closed, a slight frown and those perfect little lips. Oh how my heart burst and I sobbed 'she's so so beautiful'. During my pregnancy I'd joined so many Gastroschisis groups so I was used to seeing photos of babies with their insides on the outside, but still it was a little startling. I worried that she was in pain, that I couldn't hold her and comfort her, that she was alone.

I was taken to a ward and every other woman had their baby by their side, apart from me. It was heart-wrenching as I lay there hearing their babies cry, seeing them breastfeeding, families visiting with lots of cuddles and photographs. All I wanted was to be with my baby. The pull was overwhelming. I was told that I'd have to wait 6 hours post surgery before I could go to the Neonatal Intensive Care Unit. After 2 hours I was begging them to let me go, "If I can get out of this bed on my own and walk to the door will you let me go?", "OK, lets see how you get on" the nurse sympathised with me.

I made it to the door, of course, with complete bloody determination, catheter in hand and at last Michael was allowed to wheel me down to the NICU. 

The NICU was warm and dark, lit only by dimmed down strip lights and the twinkling of red blue and green from life support machines. It was quiet, eerily quite, not like any other ward I'd been on before, people spoke in low voices and the loudest sound was the beeping from machines. There were 8 tiny bodies in 8 tiny incubators and my Maggie was one of them. None of them making a sound.

She had wires and tubes coming out of her, I remember the tube in her nose looking so big as she was so tiny.

 The lyrics from the song 'Wires' by Athlete circled my mind.

"You got wires, going in

You got wires, coming out of your skin

You got tears, making tracks

I got tears, that are scared of the facts

Running, down corridors through, automatic doors

Got to get to you, got to see this through

I see hope is here, in a plastic box

I've seen Christmas lights, reflect in your eyes"

Her intestines were wrapped in a 'silo' bag that hung above her. There was too much 'out' for them to operate immediately so they were going to let gravity do a bit of the work and evaluate things again later. I didn't cry when I saw her, I stayed strong. I couldn't hold her, all I wanted to do was hold her, but instead I gently stroked her head through the little window. My girl. My beautiful strong girl. 

The days that followed were a blur of expressing milk every 3 hours, hobbling to the NICU and back (I ended up popping a stitch - now I have a funny little bump in my scar) and sitting by Maggie's side. I don't remember being in any pain from my surgery, I think I was running on adrenaline. Maggie needed me so nothing else really mattered. I was so lucky that St Mary's Hospital had a Ronald McDonald House so I had free accommodation on the grounds of the hospital. It meant that I could stay with Maggie throughout the duration of her NICU stay. I'd have been lost without it. 

On day 4 I was told that they were going to take Maggie for surgery. This would be the hardest day of my life. Nothing can prepare you for seeing your tiny little 4 day old baby being wheeled into theatre for life saving surgery, feeling utterly helpless and sick with worry. (Literally, I had to run to the nearest toilet and nearly collapsed). "It's time to say goodbye" were the words that floored me. 

That 4 hour wait was excruciating. 

Then I heard her cry from down the corridor "that's her Michael, that's her" I knew it, instinctively. The most beautiful cry I have ever heard. Sure enough, they were wheeling my tiny baby back to NICU after a successful surgery. She looked so scared and uncomfortable, wincing and crying. the little pink knitted hat that she'd been wearing had splodges of blood on it. She'd been through the mill, my precious little girl. 

On day 6 Michael and I were able to hold Maggie for the first time. It was scary trying to manoeuvre around the tubes and wires but that skin to skin time was heaven to me. 

Maggie and I spent the next 12 weeks at St Mary's Hospital as she slowly recovered. I refused to go home until I had my baby in my arms. Her recovery was full of little milestones. Her first poo was a big one. I never thought I'd pray for poo, I had my whole family praying for poo, lighting candles in church for poo. When that little poo came, maaaan did we celebrate! It meant her digestive system was working! Everyone got a picture of that perfect little poo. 

We had many bumps along the way; brain scans, lack of weight gain, she was unable to tolerate feeds, sickness, reflux - but she got there little by little. She so was feisty and had a habit of pulling out her wires and nasal tube, like a mini Incredible Hulk. I never left her side, from 6am - midnight I stayed with her. Then I'd go to McDonald House for a quick kip (expressing every 3 hours). I had to freeze my milk as Maggie couldn't feed, she was fed fats and lipids via a stomach tube (which led to complications further down the line). I was like a dairy cow, beakers of milk everywhere. Whenever any babies on the ward started to cry I'd start to leak! I ran out of space in the hospital freezer and donated some of it. We eventually had to buy a freezer for home and when Michael would come to visit he'd fill cool bags with my milk and take it back with him. 

When I was back at McDonald House I couldn't watch TV and was mostly too tired to speak to people on the phone. I was in my own little bubble, the outside world felt alien to me. I found comfort in music, like I've done so throughout my whole life. In the wee hours I'd listen to music that soothed me and calmed my mind. Fleetwood Mac, Marvin Gaye, The Beatles... Looking back now, I don't know how the hell I coped - but I did, you just do in these situations don't you? Sink or swim. 

The first time I was able to feed Maggie, I gave her 5mls of breast-milk via a feeding tube. 5mls! 5 bloody mls! Getting to tolerate it was our Everest, she's puke it up straight away. Gradually we built it up, 5mls, 6mls, 7mls. But the tube was troublesome, she gagged - she winced. It was a horrible and frustrating experience. Eventually we tried a bottle, but she didn't take to it. She'd gone 10 weeks without learning to feed. One evening, Michael and I were struggling to feed Maggie so I did what felt natural - I gave Maggie my boob. I was told that she probably wouldn't latch as it had been 10 weeks, I'd resigned myself to the fact that I wouldn't be able to breastfeed. But she did it, in an instant she began to suckle. Another little win. From then on she finally started gaining weight.

I made friends with the wonderful nurses and they joked that they were going to get me a uniform. They taught me how to care for Maggie, how to do her obs, temperature, check the acidity of her stomach tube, feed her via her nasal tube and what to look out for. Changing a shitty nappy through an incubator window whilst trying to avoid tubes and wires is no mean feat I tell ya!

I kept a little journal (that I still haven't been able to read since I left the hospital, but Maggie can read it one day), I tracked everything and logged all of her numbers, I would do shift handovers along with the nurses because I knew about Maggie's care more than anyone. I'd play Maggie little Music Box versions of all of my favourite songs; Bowie, The Stones, Fleetwood Mac, The Beatles and put healing rose quartz crystals under her incubator. I'm sure they all thought I was crackers.

The team at St Mary's were amazing, and we had the most incredible surgeon Mr Craigie (a fellow Scot, so points for that one!). They saved my little girl and I'll be eternally grateful to them for that. There were little ones around Maggie who didn't make it, which is a heartbreaking environment to be in. Also, some of the little angels in my Gastroschisis support groups were taken too soon. Every time I heard the news I'd cling to Maggie a little tighter. 

After 6 weeks Maggie was well enough to come home. The day we had all been waiting for. As Michael and I packed to bring her home I was excited and terrified in equal measures. I was losing my safety net, no more machines to check her heart, her breathing, no more nurses to check on her, to answer my questions and reassure me. Fuuuuuuck. 

But Maggie was ready. She was strong, she'd fought so hard to be here and now it was time to show her our home, our family, our life outside of this hospital. 

 

The months that followed were full of highs and lows, we enjoyed all of our precious firsts together, the ones I'd dreamt about when I was pregnant; first bath, first night in her cot next to my bed, first walk in her pram, first cuddles with family, first time feeding in the comfort of our own home, first snuggles in bed - it was blissful. Then came the lows, Maggie developed jaundice and after some scans in hospital we were told that her liver and gallbladder were not functioning properly and she may have a condition called Biliary Atresia that would require a liver transplant. Aaaaaand we were right back in it again, another crushing blow. That was the second hardest day of my life. Maggie's regression felt so unfair, after everything we'd been through and we'd only just got her home. I didn't realise how ill she looked at the time, I only saw my beautiful little girl. It's only now when I look back on photos that it's quite startling.

My mum and mother-in-law had taken me to the hospital the day I received the second blow, Michael was working at a conference in Brighton. We didn't think there would be any big issues, she was jaundiced but lots of babies develop jaundice. The worst was behind us. She was better now.

Just like the 12 week scan, I had an all too familiar sense that was something wrong as I studied the sonogropher's face. I held it together, nodded and said "OK" as she delivered the blows "don't google it though" she said. When I left the room I whizzed past my mum and mother in law towards the car, I couldn't look at them let alone speak to them. I got in the car, held Maggie close to me and opened safari on my phone 'biliary atresia'. The words 'liver transplant', 'cirrhosis', '41% survival rate' sent me over the edge. I had a complete meltdown. I don't know why, but when we arrived home I took Maggie to bed with me, stripped off and lay her on my chest - skin to skin. I needed to be alone with her. That was the first time I seriously felt like we may lose her, a place no parent should ever be and somewhere I never want to be again - even typing this brings it all back.

Michael was on stage giving a speech in front of 100 of his colleagues when I called, he said when his phoned started vibrating in his pocket he instantly knew something was wrong. He had his meltdown in Brighton and drove straight back home. 

The months of tests that followed and talks of surgery were really hard on us all, but by some miracle and with the right medicines Maggie began to improve and eventually her liver and gallbladder slowly began go grow and develop like it was supposed to. She did not have biliary atresia and wouldn't require a liver transplant, thank god!

Our beautiful baby girl has gone from strength to strength ever since. 

I asked Michael about his memories of this time and he said "the whole thing just felt like an out of body experience, we weren't in control and had to just roll with the punches". I didn't have the capacity to support Michael, but I know he really struggled too. It was hard on both of us, we talked, we fought, we cried, we hugged, we lived apart for 12 bloody weeks which was tough. The marriage books don't tend to have chapters on this kind of thing... but we got through it, together, and are stronger because of it. 

 

 

Last week we had her 18 month check up at the hospital and Maggie was officially discharged. As I sat in the ultrasound room, scanning the sonographers face for clues it brought everything back to me and made me realise just how far we've come. Thankfully Maggie got the all clear. She is a happy, healthy little girl. 

To say that I am proud of Maggie is an understatement, there are no words to describe. She is my inspiration and I am in constant awe of her strength and determination. She is full of fire. My wee hero. 

 

 

In October 2020 after 10 months away I relaunched Electric Eye Apparel and I was inundated with kind messages from my customers and community. So thank you to you beautiful people for your support then and now. The effects of what I'd been through with Maggie caught up with me after she'd recovered. When everything felt normal again I fell into a deep dark funk - I didn't think I'd ever go back to Electric Eye. I didn't feel like 'me' anymore and didn't think I'd be able to cope. But again, with Michael's support I forced myself to relaunch Electric Eye and it helped to pull my out of it. It supports me in so many ways and I am thankful for it. Having something that's 'mine', that feeds me, gives me a focus and challenge has helped me personally and professionally. I now have two little eyes on my so I have even more drive to make Electric Eye a success and make my girl proud. 

Today, 30th July marks Gastroschisis Awareness Day. I've never really shared my story, only bits and pieces with close family members, but this year felt like the right time to put some words down.

When Maggie was diagnosed I sought comfort in reading other peoples stories and if this helps someone else who's going through something similar then it's worth sharing. 

In honour of Maggie, Gastroschisis Awareness Day and all the little heroes out there I have created a Bowie inspired (of course) 'We Can Be Heroes' embroidered organic cotton t-shirt with all profits going to St. Mary's NICU Manchester. 

Shop kids HERE

Shop Adults HERE

 

Thank you for your support and for taking the time to read our story.

 

Big Love,

 

Alissa & Maggie x x x 

 

 




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