I was recently asked by a team of doctors in training: “What is one thing, you wish we as doctors could give?”
And the truth is there isn’t just “one thing”.
Babies with reflux don’t just have 1 thing.
Families with reflux babies don’t need just 1 thing.
I’m a Mum of 2 beautiful little girls.
Both have a myriad of ‘things’.
Ranging from laryngomalacia, tracheomalacia, obstructive apnoea, clefts, high arched palates…the list goes on. Naturally, their reflux has been more complicated than most, but that’s not uncommon for reflux babies.
How could I possibly just ask “1 thing”
Somehow, we got on the topic of babies being admitted to hospital due to gastric reflux disease. Something that is a regular occurrence in my 5 years of parenting and how the parents always look tired. No kidding I thought to myself. But then I settled on my “1 thing being” – I wish that they would understand the family implications of reflux. It affects my baby, first and foremost yes. Absolutely. But it affects my entire house. My entire community. It affects me. Hugely.
I often feel as a reflux Mama we have 3 patients in our house. We have my baby – the unwell one, the one who needs medical help and/or intervention endlessly. Then I have her big sister, who struggles with sharing mum, and seeing her baby sister in pain and in hospital all the time. She was a medical baby too; she still is to a point.
But then, they also have the guardian – the stressed out, tired, sleep deprived one. That’s me. Her Mum. The worried one, who also requires guidance and support, and possibly her own mental health treatment. But that “support” just simply doesn’t always jump out at us. I was told I wasn’t “sick enough” for maternal mental health support. So 3 referrals all got declined. I told the doctors in training,
Don’t ask a Mum how they’re doing. Coz she’s not always going to know what to say, or want to speak out, or know how to speak out. Just assume, if she looks tired, exhausted, and bleak, she probably is. Help her. Be there for her. As well as her baby. They’re a team. The baby needs the Mum at her best, as much as the Mum wants her baby at the best.
Before I had reflux babies, I didn’t have post natal depression, I didn’t have anxiety, I didn’t have PTSD, I wasn’t sleep deprived, I wasn’t endlessly just absolutely exhausted. I didn’t spend my days ringing medical professionals, answering appointments, and navigating overcrowded hospital car parks. I didn’t spend my nights googling endlessly, desperate to find SOMETHING to help me find a way to manage the difficulties my children face, I hadn’t spent several hours walking laps around my house with a screaming baby. All of which is my life now.
Now, don’t get me wrong – as far as coping mechanisms go I’m pretty good. I’ve managed. Life overall hasn’t been easy, and I’ve adapted. When people say, I don’t know how you do it. I simply, just don’t have a choice. If I don’t, no one else does.
So, while I fought for my Evie girl’s healthcare. Somehow, SOMEHOW I had to find my own too. I had neglected to do this during the height of Emilia’s reflux disease. And it paid a big toll on the way we bonded, the way we got through, and the way I came out the other side. So this time, I promised myself. I wouldn’t let that happen again. I couldn’t.
We have been seeking support from the gastric reflux community since my eldest was 18 months – she’s just over 5 now.
We have been seeking support from “True Colours” here in Waikato.
We spent my youngest’s first year of life as part of the furniture at the Waikato Family Centre.
We’ve made a village this time, and man – does it make a difference.
We are SO lucky here in the Waikato to have these amazing services. But also, I have at times had to really strongly tell myself – it’s OK to burst out to your GP with all the woes of the world, and cry to other Mums about how hard it is – because sometimes, it really is just THAT hard. It’s OK to just not know where to go next.
As a reflux mama, with a lot more experience now than what I had 5 years ago. I can now, tell myself – and bravely tell myself. That it’s OK – to need help through this. To need a village, because simply, we actually just can’t do it alone. We shouldn’t have to.
I’m no superhero mum, or super mum, or anything special. I’m not the best mum around. And I’m certainly not the strongest mum either.
I’m just a mum, wanting the very best for her little girl, for both her little girls. But also, a Mum trying to be brave about her own needs during this journey as well.
If I could say “just one thing” to another parent on this journey. I wouldn’t say, enjoy it while they’re small. I wouldn’t say, enjoy the cuddles. I wouldn’t say, it won’t last forever, they’ll outgrow reflux soon, or it’s normal they’ll come right. I wouldn’t even say I understand what they’re going through.
But what I would say – is just, you ARE doing a good job. You are doing the best, with what you’ve got. And if you need help, to accomplish the best, and be the best, and achieve the most – then that is 100% OK.
© Karli and Crying Over Spilt Milk Gastric Reflux Support Network New Zealand May 2023.
One of the risk factors for post-natal depression, is ongoing stress. A baby who spills a lot, vomits, screams or is otherwise unwell is an ongoing stress and shouldn’t be underestimated.
Perinatal Anxiety and Depression Aotearoa say this on their website “Parents who get the support and help that they need with parenting are more relaxed and better able to look after their children. If the mother or father is mentally unwell, extra support is essential to help with their recovery, and we encourage anyone to seek advice from a GP, Midwife, or Plunket nurse in the first instance.” https://pada.nz/national-helplines/– Jenny and Roslyn
These stories are our members’ personal experiences and opinions, and they are part of their healing process. Crying Over Spilt Milk Gastric Reflux Support Network New Zealand for Parents of Infants and Children Charitable Trust shall not be responsible or in any way liable for the continued accuracy of any information given, or for any errors, omissions or inaccuracies in these personal stories whether arising from negligence or otherwise, or for any consequences arising there from. Views expressed do not necessarily represent the views of the managers, coordinators or committee.