My name is Carla, I’m married to Ben and we live in Geelong with our toddler Ripley who turns three in April 2018.
Ben is studying Civil Engineering at Deakin and I am studying my honours degree in Sociology. As a family, we love travelling and getting out into the community, we love cooking and good food, nature and our dogs.
Natalie: What are some words to describe Ripley? What do you love about him?
Carla: Ripley is bright and charming, he is incredibly empathetic, and in love with the world. He loves other kids, although he doesn’t always know how to interact with them, he loves adults and often gives people hugs after knowing them only a short time. He is affectionate and caring, often asking someone if they are OK, or stopping to notice when someone is upset or crying.
Natalie: How did your journey begin with Ripley (what was going on through your mind and heart during this time)
Carla: Ripley was born slightly prematurely, at 37 weeks, which is considered early term. However, I was diagnosed late (two days before I was induced) with intrauterine growth restriction (IUGR) and placental insufficiency which meant Ripley had stopped growing and had in fact been receiving insufficient nutrients for some time. Thus, when born he was very small, on the 3rdpercentile for weight, although height and head measurements were around 50thpercentile.
He was critically ill and in the NICU for a month, at first, he struggled to breath without intervention, including being on a ventilator, and then he also had bacterial meningitis. He was in the intensive care unit at the Royal Children’s Hospital for a week, on breathing support, and once he was able to breathe alone, we were able to transfer him closer to home. He had been born in a small private hospital and was transferred multiple times in the early days as he deteriorated further beyond what doctors expected.
It was an extremely traumatic time for us, even when he was able to breathe and was out of danger, I had to learn as did he, how to breastfeed, and he also had to put on a lot of weight prior to going home. While we stayed the course of the IV antibiotics he had to have, I went into the hospital, all day, every day to breastfeed him as many times as I could, pumping after every feed to ensure the hospital had enough overnight.
Eventually at one month of age, he came home, but he began to have troubles from that very first night. We didn’t recognise what was happening but each night he coughed, spluttered, and choked, and progressively as he got stronger, he began to fight sleep as he was in pain. He would wake every 20-30 mins, screaming in extreme pain, completely inconsolable.
Eventually he’d pass out from exhaustion, to wake up 20 mins later. At four months after months of advocating for him, the paediatrician recognised Ripley had severe gastroesophageal reflux disease (GORD). He was put on medication and I started an elimination diet, but truly, not enough was done, and in hindsight we now know he needed a lot more support, medication and medical intervention. Over the next 12 months he continued to be in pain and we tried in vain to ‘fix’ the problem with diet, medication and endoscopy investigation.
We slept in an armchair every night, my husband and I splitting the night equally, as it was the only way Ripley would sleep more than 30 mins – by being upright. He struggled with weight gain, was not interested in eating any solids, breastfed hourly or more often through the day and night and spent most of his awake time being irritable or distressed. We attended the ED department many times, but nothing was to be done.
It gradually improved over time, and now at three he has no inflammation in his oesophagus, however, he is extremely allergic to food, and has a very restricted diet. I stopped breastfeeding him at 2 years 9 months due to being pregnant and my milk disappearing. Now we are still trying to find the right mix of eliminated foods, and medication, to help him feel 100% well. It is incredibly difficult.
Around 18 months we began to notice differences with the way Ripley interacted with his peers and began to question how much of his distress due to reflux, could be perhaps part of a larger problem.
Natalie: What is the name of the condition(s) that Ripley has? Can you share with us a little more about it?
Ripley has multiple diagnoses;
- His initial diagnosis was Gastro-Oesophageal Reflux Disease and Multiple Food Protein Intolerance.
- At 12 months he was diagnosed with extreme tongue, lip and cheek ties with inhibited effective transfer of breastmilk, meaning he was always starving.
- At 12 months he had a confirmed biopsy for reflux under endoscopy, as well as a diagnosis of profound iron deficiency anaemia. He couldn’t tolerate supplements so has required iron infusions in hospital for the anaemia (he continues to lose iron for an unknown reason).
- At 17 months he was diagnosed with obstructive sleep apnoea, in which the tonsils and adenoids cause a child to stop breathing and making gasping noises in their sleep. He had surgery for this which had to be repeated at 30 months.
- At 18 months he was diagnosed with Food Protein-Induced Enterocolitis Syndrome (FPIES) which was very late, but it explained his severe vomiting to the point of lethargy when eating egg. This was only diagnosed after a hospital admission due to vomiting (the hospital thought it was gastro, but the allergist made a correct diagnosis).
- Also at 18 months, a child and adolesecent mental health team assisted us to gain greater understanding of Ripley’s mental health, and an Occupational Therapist diagnosed him with Sensory Processing Disorder. This isn’t a true diagnosis in Australia but is quite common especially in children with Autism Spectrum Disorders (ASD).
- At 2, our paediatrican began to discuss with us the possibility of ASD.
- At 2 years 3 months, a speech pathologist diagnosed Ripley with a 12-month receptive language delay, and an 8 months expressive language delay.
- The assessments by the OT and Speech Pathologist strongly suggested ASD, which was diagnosed at 2.5 years when Ripley continued to show great difficulties with repetitive play, transitions, speech and communication.
- He also has anxiety although this hasn’t been formally diagnosed as yet.
Natalie: What are your worries and wishes for Ripley?
Carla: Our worries are immense, although we know it could be so much worse. From a medical perspective, it has been hard to have times with Ripley when he is calm and when we can all enjoy each other.
The long period of sleep deprivation (he has turned a bit of a corner with sleep since starting a FODMAP diet in February), caused us all to be grumpy and depressed, and the trauma of his birth and time in the NICU, as well as the extreme distress he showed in the first 18 months of his life, caused my husband and I both to suffer with post-traumatic stress disorder (PTSD).
Although it’s called ‘post-traumatic’, I really feel it should be called ‘ongoing traumatic stress disorder’ as for many people who have PTSD, the situation that triggered it, isn’t necessarily over. We do worry about his ability to enjoy food, and when he will tolerate more foods and be able to eat like other children do. We worry about the effect of the trauma and pain on his brain, nervous system etc. He definitely has anxiety.
From a developmental perspective, with autism, you really can’t predict where we will be in 1 year, 3 years or 10 years. We feel he will cope in mainstream school with some help, but it’s hard to say for sure. He is learning all the time, and developing more skills, but his difficulties with social situations becomes more evident with time, not less. I’m sure any autism mum or dad can relate to that. Many people see him babbling or climbing and can’t understand how he can be on the spectrum; as a community we need to understand autism and disability a lot more than we do currently. There is sometimes a distinct lack of empathy around difficult situations like these; parents of children who are typically developing and healthy don’t seem to recognise the toll diagnoses can take on the family, of course emotionally and financially, but also on dreams for the future.
We worry more about how we will live life the way we want to, how we will embrace our dreams and passions and not let this situation (and the future) derail us. After a long night of no sleep, and weeks and months of the same, with each day filled with therapy and appointments, it’s hard not to feel a little down about it all.
I think ultimately, we feel Ripley has a bright future, but he will need support and help to navigate the ‘typical’ world.
Natalie: I’m passionate about the (special needs/medical needs) and self care connection. Raising a child with a medical condition or diagnosis can bring some big challenges, how do you cope? Are there any self care practices that helped you on your journey? How do you get through the tough days?
Carla: Coping is difficult! Sometimes I’m not sure how I cope, particularly if one part of our situation eases, and then suddenly I think, how did I ever cope with only 1-hour sleep or sleeping in an armchair. For me, the main part of coping is to let go, simplify my life. I discovered minimalism before I had Ripley, and it has been an immensely useful tool for embracing what’s important in life and learning to let go of what doesn’t add value.
Physical items are part of it, but a bigger part for me has been perfectionism and obligations to family and friends that perhaps aren’t as supportive as I’d like them to be. When Ripley was only a few months old we decided to move out of Melbourne, to Geelong to have a simpler life, downsize our mortgage and this has proven to be an excellent choice! It has meant less financial stress, and allowed us both to study, which has meant we are more available and more flexible with appointments and ‘bad days’.
That’s not possible for everyone, but I do advocate for women and families to really think about what they value most, and consider what they could let go to free up more time and/or money. This might be just so they can get a break, or so they can pursue something that is meaningful to them. Life is too short to work in a job you hate, or chase fancy cars or clothing, just to be in debt or tied to a job you hate. That’s my personal belief anyway.
Natalie: What advice would you give a mum who is beginning her journey after receiving her child’s diagnosis?
Carla: Find your tribe, find your network. Don’t rely on people who don’t get it and who don’t support you. Don’t feel guilty for letting go of relationships that are taxing you.
Explain the situation if you want, or don’t, you are not obligated to explain why you can’t meet for dinner, don’t work or don’t have a new car. Be gentle on yourself; a lot of these situations can’t be fixed, or if they can be fixed, it might take time.
Embrace the support that is out there; get counselling and learn to understand yourself. Find a passion you can spend time on, even if it’s only 1 hour a week. Make time for yourself.
Try to be grateful for what you do have, but don’t beat yourself up about being down too, it’s OK!
Natalie: What are some lessons and blessings you have learnt since becoming Ripley’s mum? How has it changed you as a person?
Carla: So many lessons. I’ve learned that I’m stronger than I ever believed possible. I’ve found a resilience inside myself, and a passion for helping other people to see this in themselves too. I have found more time and space for the things that matter. I’ve stepped off the rat race to follow my dreams. I’ve discovered I can do things I thought I wasn’t smart enough for (studying theory at honours level). I have discovered I can be a great and patient mum. I’m much stronger as a person and stand up for myself more. I discovered I am still learning all the time.
Natalie: Do you have a favorite quote, prayer, or piece of miracle inspiration that you would like to leave us with?
Carla: My favourite quote is “this too shall pass”. It works both ways, in terms of reminding you that the bad times will pass, but also to embrace the good times, as they too will pass.
Life is a rollercoaster (some people have a bigger scarier version than others).
Thank you so much Carla for sharing your incredible journey with us. Feel free to leave Carla a comment below.
If you would like to share your miracle moments and special needs journey, please get in touch here.
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