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Car journey, journaling… a gastroschisis update

Updated: Nov 17, 2023

I’ve been debating on whether or not I should do a new blog, I’ve been trying to keep a lower profile online whist I write my book, however I think a gastroschisis update is necessary for the awareness it can spread. So here it is, here are a few feelings from today’s appointment, written in the car on my phone. There will be typos.

Car journey thoughts: on the way to our appointment.

I despise appointment journeys, even on a good day, these trips always feel heavy. Autumn has started to transition into winter, and it's a beautiful time of year, my favourite actually. People seem to be less fake during colder weather, it’s like the pretence of perfection has lessened unlike in summer when it's all about selfies and sunshine expectations. Autumn strips away the facade, and in winter, everyone can wear their resting "fml" face while going about the mundane tasks of everyday life and blame it on the rain. It feels more authentic. However, this time of year also brings more challenges. I'm less busy, and I’m a person who tends to rely on distractions. This weekend will be my last wedding of the year.

So It's been ages since I've blogged. I'm still writing as always, but these days I'm focusing more on my book. I've also been occupied with the business side of my photography. We had a great summer of weddings, and we just finished a product and lifestyle photography project for a local charity. So, now I'm on the verge of having more free time. What could possibly go wrong.

Car journeys to the hospital always trigger me so of course I start to reminisce. I remember the feelings all too well, the anticipation and anxiety of appointments. There were countless drives to hospital appointments. Perhaps once you've experienced those feelings, a part of them will always linger, buried deep down, only to resurface in triggering situations. However, they're easier to deal with and shorter-lived now, and my daughter is in the back seat, playing and talking. She's happy, healthy, and a handful. I'm grateful for every mischievous moment with her. She'll be two soon. It feels almost unreal that I've been loving her on the outside for almost two years! Time sometimes moves too fast, and other times, it seems freeze.

Time is a strange concept to me, and if it's truly relative, maybe that's why I spend so much time being thrown into the past, oscillating between the now and then. My reality and what has been often blend together. It's like a force pulling me backward as I push myself forward in time. But as I glance back during our drive to the appointment, she's fast asleep now. The happiness I feel warms my body. She's tired because she insisted on drawing a picture at 5 am this morning... I realise I could use a nap too, thinking about it. But we're getting closer to the hospital.

We drive past the park—the park we walked around during our stay. It looks lovely with the trees dressed in their autumn colors. Winter hasn't taken away all their leaves yet, so the park still has a reddish shade. It's beautiful, but my stomach still drops as we drive by. My heart rate still increases, and I just want to go home.

We drive past the Ronald McDonald Charity House. It's an amazing place. Last month, my business partner and I donated to them after a charity photoshoot. I will always be grateful for the help they provided me and my family. As we drive past, my emotions start to lose their shit a little. I message a friend and complain about the parking. Complaining about parking is a normal thing to do when feeling thrown off, right? After all, we're British. The carpark is so tall and grey, I recall the late nights walking past it whist I stayed in the family unit. They weren’t good times, at all.

As we drove in there was a sign “car park full” so my husband had no choice but to drop us off whist he found another place to leave the car. And then it was time to go in, so of course it’s time to stop writing…

Car journey thoughts: on the way back from our appointment.

My hands smell of the special NICU unit where my daughter spent time as a newborn. The smell is from the hospital's hand sanitiser. That brand will always make me nostalgic, and not in a good way, it’s as if I'm walking through the corridors again, climbing all those stairs to get to her. But I'm not. I'm in the car now, on our way home.

I enjoy driving away from there. My almost two-year-old daughter is smearing herself with chocolate in the backseat. I can't wait to clean that up. She keeps calling me to share her excitement about being allowed to eat chocolate in her car seat. "Mumma yummmmmm." Clearly, she's enjoying herself. I want to sleep to avoid processing today for a little while. Today was mostly positive, as all our appointments now tend to be. We have the all-clear for a year, which means we have a whole year until the next appointment.

However, I choose not to sleep and continue writing to start processing today's appointment and my emotions.

Processing my thoughts and feelings.

The waiting area was much quieter today, they really do a great job of making it as welcoming and cheerful as possible. We couldn't find parking, so I went ahead with my daughter to sign in and take a seat. They were playing Sing 2 on the TV for the children, which both of us were equally thrilled about. The interior hasn't changed; it's still bright and colourful. However, this doesn't distract me from the fact there are some very unwell children waiting. As I sat down, I thought about the child I walked past on the way to my seat who had clearly been through chemotherapy. A mother walked by, and our eyes met for a second, sharing a brief moment of solitude. Her baby, still quite new, had clear breathing difficulties. I remembered that feeling, the heaviness in my stomach. Sadness, the same feeling I felt in NICU as I watched the other mothers with their babies, but now accompanied by a new, strange guilt. In the grand scheme of life, our complications are far less severe than others. I sat there waiting, and just before we were called in for our appointment, my husband joined us. Thankfully, he managed to find a parking space.

The surgeon was nice; today we saw someone new. I knew we weren't going to see our usual specialist. The surgeon who performed the operation and saved our daughter's life informed us at our last appointment that she was taking a new job in a different hospital. It's amazing to think that she saves babies' lives for a living. Wherever she is now, they are incredibly lucky to have her on their team.

As always, they asked to look at my daughter's bellybutton. I love her bellybutton; it's her battle scar, and she doesn't even know it yet. Today, she walked in and sat herself on the chair, listening as we talked, of course she didn’t understand a word. The surgeon turned to me and asked how aware I was of the complications that could happen at any time. I replied “very aware”, because I have anxiety and 24-hour access to Google, so guess who is VERY well-informed? Yep, that's right, my head is forever full of the 'what ifs.' However, I still don't like being told about all of them. Nevertheless, we agreed that it's imperative we know exactly what to look out for and so does my daughter as she gets older. My husband, who always looks so terrified in these appointments, asked if there is anything we can do as she grows up to help prevent any future complications. The answer was no. We need to carry on with our lives as normal; nothing we do will prevent or cause the possible complications. But we need to be aware of them all, so that's fun. It’s basically being told this terrible thing might happen, or it might not, but it needs to always be in the back of our minds as a precaution.

Our next appointment will be in a year's time. Eventually, they will be 2-3 years apart, and one day we will get told amazing news, we won't need to go back unless there is a problem. It's likely she will be close to or in double figures in age when that happens, as they need to keep a close eye on her as her body grows.

So, because I'm all about working smarter, not harder, I've asked my trusty AI to help me explain some of the 'lifelong' risks of gastroschisis and the complications that can arise from the life-saving surgery. So here is a little medical talk:

"As individuals with gastroschisis grow up, they may face potential lifelong complications that require ongoing medical management. Here are some examples:

Nutritional Challenges: Due to the shortened length of the intestines or impaired absorption, individuals with gastroschisis may experience difficulties in obtaining adequate nutrition. This can lead to issues such as malnutrition, vitamin and mineral deficiencies, and growth delays. Close monitoring by healthcare professionals and personalised dietary plans are crucial to ensure optimal nutrition.

Gastrointestinal Issues: Individuals with gastroschisis may be more prone to gastrointestinal problems such as chronic constipation, diarrhea, or irritable bowel syndrome. Regular follow-ups with gastroenterologists can help manage and alleviate these issues.

Surgical Complications: Since many babies with gastroschisis require surgical repair shortly after birth, there can be potential long-term complications related to the surgical intervention. These may include hernias, incisional scars, or complications from previous surgeries. Regular evaluations by surgeons and appropriate interventions can address these concerns.

Scar Tissue and Adhesions: The presence of scar tissue and adhesions resulting from previous surgeries can cause complications as individuals with gastroschisis grow. These adhesions can lead to bowel obstructions, pain, or restricted movement of the intestines. Close monitoring and prompt medical attention are important to manage these issues.

Psychological and Emotional Impact: Living with a chronic condition like gastroschisis can have a psychological and emotional impact on individuals and their families. Coping with medical interventions, potential complications, and ongoing medical care can be challenging. It is essential to have a supportive network and access to psychological support services to address these aspects of well-being.

It's important to remember that each individual's experience with gastroschisis can be unique, and the specific complications they may face can vary. Regular medical follow-ups, open communication with healthcare providers, and a comprehensive care plan tailored to their specific needs are crucial to effectively manage potential lifelong complications.”

Awwww, who doesn't love a little AI, right? So, yeah, that's today's appointment in a nutshell. There was obviously more medical talk and some big words, they explained why some of these complications might happen but I'm too tired to write anymore. In fact, I'm exhausted. But I'm a mother of two amazing and totally different children, each with their own unique challenges, and they are so worth all the exhaustion and complexities that come with navigating motherhood. I love them both so much.

Next week I’m going to make some new art, because I have feelings to put into images.

Thanks for reading.


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Get Involved- The shape of us

I really like blogging. It feels very 'me,' and it's great to do something we love, right? I've wanted to do this style of work for years, but I wasn't ready to open up about my artwork as I am now.

I'm really finding my voice, and this has given me a deeper reason for creating. However, having my own voice doesn't feel like enough. We all have stories and struggles that are different. Art for me is about connection, awareness, and storytelling, and I believe that together, there is so much awareness to be spread.

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