Sleep – Awareness Week 2021

What is SUDI?

Recently I completed The National Sudden Unexpected Death in Infants (SUDI) online prevention program and it has got me thinking a lot about safe sleep. I know for me, pregnant with my first son Peter, SUDI or SIDS and “Cot Death” as it has previously been known; was one of my biggest fears. Luckily for me, Peter quite happily slept on his back, swaddled and in his own bassinet. But when Tobias came along he fought the swaddle and hated being on his back. In fact, he rarely slept unless perched over my shoulder like a drunk parrot. In those early days I didn’t know that he had Laryngopharyngeal reflux which was the cause of his discomfort and attributed to his struggle with sleep.

Sudden Unexpected Death in Infants (SUDI) is a term used to describe the sudden and unexpected death of a baby less than 1-year-old in which the cause was not obvious before investigation.

In the 1980’s SUDI rates were the highest in the world here in New Zealand. A 3 year “cot- death” study was done, which identified three modifiable risk factors:

  • prone (on the tummy) sleep position,
  • maternal smoking and
  • lack of breastfeeding.

New Zealand led the way with a “Back to Sleep” campaign which saw mortality rates halve within just two years of its launch and it has since gone on to be implemented in most developed countries.

What have we learnt?

So what is the takeaway message from these studies and campaigns? In order to protect our tamariki we must remember PEPE:

P – Place baby in their own bed: Always place your baby inpepe their own sleep space but close to their caregiver (this led to the introduction of pepi pods, see image). The space should have a firm, flat, well fitted clean mattress with light bedding to avoid overheating which cannot come over their head. The environment should be free of soft furnishings such as cot bumpers and soft toys.

E – Eliminate smoking during pregnancy: Make sure you protect your baby with a smoke-free family (whanau), home (whare) and car (waka). Babies born to smoking mothers have a reduced lung capacity due to their lower birth weight but they also have a defect in arousal which puts them at an increased risk of SUDI.

If you want support to give up smoking:
Call the Quitline on 0800 778 778 or text 4006 – it’s free
Check out the Quitline/Me Mutu website: https://quit.org.nz/en/reasons-to-quit/smoking-and-pregnancy?gclid=CjwKCAiAnfjyBRBxEiwA-EECLKE10A2au8ZwcLKs-rm1n97HTHK0aI0vKEp9SXaYeBlZparsE49_JBoCHQoQAvD_BwE

P – Position bapositionby on their back to sleep: Studies show that babies may actually clear secretions better when placed on their backs. When a baby is in the back sleeping position the trachea lies on top of the oesophagus. Anything regurgitated or refluxed from the oesophagus must work against gravity to be aspirated into the trachea. Conversely, when a baby is in the stomach sleeping position, anything regurgitated or refluxed will pool at the opening of the trachea, making it easier for the baby to aspirate.

E – Encourage and support mum to breastfeed: Wherever possible breastfeeding should be initiated. Your breastmilk makes a huge difference to your baby’s health. Breastfed babies wake often to feed; this arousal is actually an inbuilt safety mechanism.

If you need support with breastfeeding contact your local La Leche leader: https://lalecheleague.org.nz/get-help/

What if I can’t breastfeed or choose to bottle feed?

If you are unable to breastfeed talk to your midwife, doctor or nurse first. The link below gives great advice from the Ministry of health around safe bottle feeding practices: https://www.healthed.govt.nz/resource/feeding-your-baby-infant-formula

The Nutricia Care line can put you in touch with a registered health care professional and can help you to decide which formula is best for your baby. Ph. 0800 438 500. You can also check out their website at: https://nutricia.co.nz/early-life-nutrition/aptamil

Can our babies sleep anywhere else safely?

A recent study showed that parents drive an average of over 1,500KM a year to give their little ones some shut eye! And yes, I am one of those parents! But is it safe? It is NOT safe to have your child sleeping in a car seat that is not in a moving vehicle. This is because the movement of the car stimulates breathing, so, once home you should then transfer them to a firm flat surface, or, just keep cruising until your little one wakes and enjoy the ride!

You may have heard about the Fisher Price Rock and Play recall, last year. This product was popular with parents because it was a bassinet type rocker on an incline. It was sold as a sleep product but it had absolutely no safety testing. Babies slept well in it but many babies also died as they were able to roll and suffocate. Babies should never be placed in rockers or bouncers for sleep.

For me, with Tobias especially, baby wearing has been a lifesaver. But even carriers and slings have risks and there have been deaths associated with suffocation so care must be taken. The adult using the carrier must make sure the babies nose and mouth are free at all times and that the airway is not occluded by a chin on the chest position. Care should be taken not to impair breathing or cause overheating by covering these carriers with a coat or blanket. One study recommends that soft carriers should not be used until the baby can hold his head up alone and contraindicates use prior to four months.

What about inclining the cot?

Many of us may also have been told to raise the cot head in order to reduce reflux symptoms but this is now changing too. Recent research has shown elevating the head of the cot does not clinically improve reflux symptoms. But it does pose an increased risk of SUDI as it may cause the baby to slide down to the foot of the cot into a position that could compromise breathing. Placing a pillow or wedge under the mattress or in the cot with the aim of elevating the baby’s head is also not recommended as it increases the likelihood of baby slipping down under the bedding and the baby’s head becoming covered.

Will our babies ever sleep?

sleepI think sleep and babies has to be the biggest and most controversial subject in parenting. I have had complete strangers ask me if my baby sleeps through the night? What is our obsession with this? Peter is almost 2.5 years and rarely sleeps through the night. Tobias at 1-year-old still feeds A LOT at night, which is biologically normal for a baby of his age. Am I tired? Yes! So very tired some days! But I have learnt to accept that my boys will wake at night and given they both have respiratory issues, I choose to see this as a good thing. There is no magic answer when it comes to sleep, and reflux babies struggle all the more. What we can offer is support, understanding and compassion and that is what our community is all about. But what we must also remember is that we must place our babies in a safe place to sleep every sleep because the price we could pay for not, is too high to speak of.

Written by Jenny Overwater, National Coordinator and Mum of two amazing boys for March 2020 Newsletter.

Resources/ Related links:

© Crying Over Spilt Milk Gastric Reflux Support Network New Zealand May 2021.

Reflux is not just a spilly baby. Reflux is… Awareness Week 2021

A post by GRSNNZ member Shannon in our private support group. 

Every night when I’m feeding my 4mo (2nd child with reflux) and reflecting on the day, I keep thinking how people with children without reflux, just don’t get what it really is. So I mentally write a list in my head about what it really is. Tonight I wrote them down… some light hearted, some not so much… Feel free to add any of your own, I’d be interested to know if others feel the same

Spilly Baby Canva

Reflux is not just a spilly baby. Reflux is… 

  • Hearing a burp and jumping to find a spill cloth.
  • Rubbing in spew with your foot into the carpet and keep on walking… Don’t even get me started about the couch.
  • Wiping your baby’s projectile spew off a stranger’s dress at a wedding while apologising profusely.
  • Changing your baby’s outfit, and yours, three times before getting out in the morning
  • Always having spare sleep sacks, onesies and sheets for over the night handy
  • Watching your child scream and cry and trying to work out what’s wrong with them
  • Feeling hopeless
  • Scrolling through your phone at 3:53 am trying to work out the root cause
  • Eliminating dairy from your diet
  • Eliminating gluten from your diet
  • Eliminating caffeine, alcohol, apples, acidic foods, from your diet
  • When people ask if your diet has helped the spilling, you don’t know but you do it anyway, out of fear of making it any worse.
  • It’s realising you’re eating fresh air so Reintroducing foods into your diet
  • Trying osteo, chiropractor, Raiding the health food store. Trying slippery elm, Rhuger, probiotics, Gaviscon, Losec…
  • Taking advice from strangers “have you tried (insert already tried and failed “solution”)…?”
  • Being up every hour and a half over the day AND night
  • Sleep deprivation
  • Seeing a hospital paediatrician and being told there’s nothing they can do for my “refluxy, colicky baby” … “she’ll grow out of it.” Feeling devastated is an understatement.
  • Many tears. From mum and baby.
  • Being told “Oh yes my baby was spilly too, they just grew out of it at 12 weeks”
  • Trying goats milk formula, soy formula
  • Wondering if you should just give up breastfeeding, even though you’ve been told breast is best.
  • Taking spill cloths and bibs with you. Everywhere.
  • .. So. Much. Washing.

From other members…

  • Finding friends where you feel comfortable at their house and sharing baby toys with because their carpet looks just like yours.
  • When people ask to hold my baby I say “Sure at your own risk!”, that way when he spews all over them I don’t feel so bad.
  • Finding other people who get it. I’ve had a couple say “I had a reflux baby, are you ok?” You can tell by the way they look at you they get it, it’s so reassuring.

© Shannon, other members and Crying Over Spilt Milk Gastric Reflux Support Network New Zealand May 2021.

Elei’s Story – Awareness Week 2021

Our son Tyson was born a little overdue, we got there in the end, back and forth to Maternity but 3rd time a charm. After being given the okay we were left to go to the birth centre to recover.

But he wasn’t settling, ob’s every 2hrs, the morning nurse came in and next we were in NICU for 7 days.

Fast forward to 6 months old, Tyson was a dream, but we started having issues with his weight, they kept putting a Nasal Gastric tube in and out, back and forth to A&E, then we found he had chronic constipation, he was put on IV Clean Prep and we trialed every medication for constipation, still an issue to this day at 3.5yrs old. He was still having issues with his weight and the NG tube kept being put in and out, there were constant visits to A&E.

We found ourselves at one stage on the ward for 16wks. We were told it was behavioural, we did messy play. His team had refused a pH study, so we worked with the dietician and SLT, we tried formulas, you name it we did it. He was labelled Failure to Thrive and Food Aversion.  I thought I was losing my mind.  The constant screaming and arching his back. They saw me in tears, questioning my mentality, I was fine, I just needed help for him. All medical professions by then claiming its behavioural.

I was going to lay a complaint, I had an instinct, talking to our support people, as we have no family support, they told me to go to the Disability Commission and they appointed someone, the next day she came up to the ward and tables were turned. We had our team changed, Tyson had his 4th biopsy, and that it is when it was picked up, he has severe reflux, everyone except us as parents were gob smacked, immediately he started on triple treatment and everything else just fell into place.

All I can say is trust your instincts, you know your child best.

GRSNNZ are amazing, we can all relate, its non-judgmental, sometimes it’s nice to sit down, have a cuppa while it’s still hot and chat to other mums who are in your shoes.

Tyson has since had a younger brother, Lachlan, who was born with a Bilateral Cleft Palate and was NG fed since birth, another NICU baby, our last child of 7.  He was diagnosed with reflux at 6wks old, I would cry mixing Gaviscon at 2am, he was always crying. At 9mths old he had a complete Cleft repair, whisking his tube out early we were admitted to MotherCraft, baby number 7, really? He never knew how to feed though so what did I have to lose? I did it and we learnt something new.Elei Picture (2)

Once he started becoming mobile we were able to phase out his reflux medication until recently, at 16mths old, he started waking choking and spluttering and the whole afternoon would turn to chaos because he wouldn’t resettle. We took him to our GP who checked him over, all checked out well, we put him back on his reflux meds and he is a changed boy.

You are their voice, you’ve got this, you are not alone, you will get through this.

I am now a solo mum of 7, 5 of which have disabilities.

If I can do it, you can too.

Someone once told me if week by week is too hard, take day by day, if day by day is too hard take hour by hour.

Reach out ask for help, I’ve learnt people genuinely care,

It’s okay, you/we got this xx

© Elei Levao and Crying Over Spilt Milk Gastric Reflux Support Network New Zealand May 2021.

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.

Mackenzie’s Journey of reflux and dietary intolerance – Awareness Week 2021

Nothing can prepare you for having a baby in a pandemic. Our beautiful little girl Mackenzie was born during level 3, we couldn’t have any visitors and all our family were half a world away in South Africa with no way of getting to us. I found the whole experience overwhelming and quickly developed severe post-partum anxiety. When she was two weeks old, my husband had to return to work, leaving me on my own with a baby that screamed constantly and without the one person keeping me together. I was convinced there was something wrong but my midwife, brilliant as she absolutely was, kept reassuring me that newborns are tough and it would all get better.

Faced with the prospect of several months of crying and screaming and no sleep, I turned to my GP for help and she recommended the Waikato Family Centre and for the first time I started to feel a little bit of hope. I rang them up and explained that I had no idea how to stop a baby from crying and could they please show me. They were so helpful and so began the first of many trips to what would become our second home.

At about five weeks old, during one of my many visits, one of the nurses looked at me as I tried to settle my screaming child and said, “yes newborns are hard, but it’s just not supposed to be this hard.”  And for the first time, I realised it wasn’t all me. She handed me a print out from the crying over spilt milk website detailing the symptoms of silent reflux and I could tick every single symptom on the list.

We then went down a path that would be all too familiar to many reflux families of giving Gaviscon, then Omeprazole, then both together, then changing doses and eventually things began to settle a bit, but we still had dreadful days. Her nappies were horrendous; slimy, green and spotted with blood and we started to look into the possibility of food intolerances caused by something in my diet. We started with milk, quickly followed by soy and things started to look up. Her eczema cleared, her baby acne cleared and she started to be able to take short naps in her bed before I’d have to pick her up and let her sleep on me. But the mucousy nappies continued and then her sleep deteriorated. I then tried cutting nuts out of my diet, shortly followed by chocolate…then corn…and then more and more. Pretty soon I’d eliminated eight things from my diet and my child was going downhill again. In desperation I cut nearly everything out and went on a diet of pumpkin, kumara, brown rice and chicken.

What was supposed to be a short fix turned into several weeks of a truly boring diet but slowly things started to look up a bit, though we still had days where Mackenzie would be completely inconsolable. Our next step was Mothercraft. We went to Mothercraft when Mackenzie was nineteen weeks old and they helped identify that whilst my supply was great in the morning, it was dropping off and that was causing some of the issues. We reintroduced gluten into my diet – bread has never tasted so good – and things were looking up. And then on day three Mackenzie developed a gastro bug and was immediately discharged. As disheartened as I felt, we were at least now on the books of the dietician and the paediatricians who gave me strict instructions to stop analysing every nappy and purely treat based on behaviour.

Mackenzie is almost seven months old now and is doing so much better. After developing a bit of a feeding aversion we’ve had to do baby led weaning to start solids as she will not allow us to feed her, and I do need to feed her at night as she often won’t take enough during the day, but I have reintroduced everything but soy and dairy into my diet, she’s gaining weight okay and she’s a very happy child. We still have her on omeprazole and still go through boxes of Gaviscon but our days are more peaceful and she can sleep in her bed most days. I don’t know what exactly helped her intolerances, I suspect she did have a few more than dairy and soy and outgrew them but whatever they were I’m grateful we are where we are today. We don’t have things perfectly under control and it would be lovely to get a full night’s sleep, but I’ll take the victories where I can and I’m not going to complain about the rest. For those who are still struggling down this road my only advice really is that it is hard, but it isn’t meant to be that hard, and it will get better. In the meantime, take whatever help you can get. People love baby snuggles so if you’re exhausted and your baby will only sleep on you, rope someone in to cuddle your baby for a few hours whilst you get some rest. And if you think something is wrong, keep pushing, take photos, take videos and keep asking for help.

Mackenzie Picture
© Danielle Kruger and Crying Over Spilt Milk Gastric Reflux Support Network New Zealand for Parents of Infants and Children Charitable Trust December 2020.  First published in the GRSNNZ Newsletter December 2020.

If you suspect your baby has a dietary intolerance talk to your GP or paediatrician first to best assess your baby’s needs. A complete and nutritious diet is especially important for breastfeeding mothers.  Before making any changes to your diet seek the advice of a medical professional.

One of the risk factors for post-natal anxiety, 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/support-services-helplines-national-helplines-2/ 
– Jenny and Roslyn

Journey of Reflux during Lockdown – Awareness Week 2021

Journey of Reflux during Lockdown

Barely three weeks after becoming a mum, NZ was thrown into lockdown; supports and practical help cut off. Instead, I found myself with a husband working from home and a baby that was incredibly distressed. This was not the start to motherhood that I had imagined.

Just prior to lockdown the GP advised us that they suspected our daughter had cow’s milk protein intolerance (CMPI). She was put on Pepti Junior formula to help with that. Heading into lockdown she was starting to settle but then the progress quickly plateaued.

My days during lockdown quickly became spent trying to console my upset baby or trying to get her to sleep (then once she was asleep keeping her asleep). There were numerous doctors’ appointments by phone then video call then finally in person. We even had two hospital trips during lockdown (one due to a fever following first round of vaccinations) and the second from her being absolutely inconsolable for hours. During the second trip we were told that she was likely suffering from ‘purple crying’ and it would improve with time. What was this ‘purple crying’? We had no idea at the time but we knew something was causing her distress.

Having not met the criteria to see a Paediatrician through the public health system (we were told criteria wasn’t met because she wasn’t vomiting blood and didn’t have blood in her stools), we requested a referral to see a Paediatrician privately. They didn’t start seeing patients until mid-May (once we were out of lockdown). By the time my daughter was able to get the expert eyes on her it was mid to late May and she was nearly 4mths old and she had been distressed for weeks.

Most days during lockdown my daughter would spend hours a day grizzling and/or crying. We had suspected reflux and had talked with the GP about it during lockdown but we just had to wait until Paediatricians were allowed to see patients again. The wait was agonising.

Nicola Picture

When we finally saw a Paediatrican he spoke of how babies shouldn’t have to suffer with reflux. It felt like incredible validation as up until that point all the health professionals we had seen told us reflux was normal, and it was a phase and they’d grow out of it. Even if it was a ‘phase’ why should the baby have to suffer? As an adult we wouldn’t allow that.

Last year I read that they (scientists I’m guessing) believe there is something inbuilt in a mother to respond when she hears her baby cry. Holding your baby or child while they are in distress and knowing there is nothing you can do but rock them and love them is so heartbreaking. It can make you question your ability to parent because you feel like you’re not meeting their needs, even though that is not the case. Rather it is sitting in the hands of medical professionals (and often time waiting for appointments). Placed in a situation such as this for a prolonged time can create a point of trauma for parents. I know it did for me during lockdown. There is great emotional strain put on parents of babies who suffer from reflux and I think that is often overlooked. As parents, especially mums, we need to be kind to ourselves and know that even though we wish we could, we can’t always meet our babies needs as quickly as we had hoped. Take heart in knowing that the reason why you so desperately want your baby not to suffer is because of your great love for them. They are so special to you and it breaks your heart to see them suffer. You are not alone in feeling like that.

As a side note, following lockdown I emailed the Prime Minister’s office to let her know some of the challenges we faced in accessing medical care for our newborn during lockdown. In the coming months I plan to contact my local MP to raise the issue of parents often being left with no choice but to see Paediatricans privately to get access to reflux diagnoses and treatment. That creates significant barriers for babies to access the care and treatment they need and deserve, which to me is unjust.


This year the GRSNNZ committee hopes to re-run a previous survey to gauge the level of support families within New Zealand with infants and children suffering with Gastric Reflux Disease feel they are receiving. We will make the results of both surveys available publicly with no identifying data.

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.

One of the risk factors for post-natal depression and anxiety, 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/support-services-helplines-national-helplines-2/ – Jenny and Roslyn

© Nicola Mansour and Crying Over Spilt Milk Gastric Reflux Support Network New Zealand for Parents of Infants and Children Charitable Trust March 2021.  First published in the GRSNNZ Newsletter March 2021.

Post Natal Depression: Bec’s Story. Awareness Week 2020

I sit in the comfortable leather chair, feet reclined, and try to count my blessings. A single salty tear runs down my cheek, and then another until my vision begins to blur. Through the baby monitor I can hear him crying again and I know that I must go to him. But I don’t want to. The tears begin to cascade down my face now, as I stand, trying to blink and compose myself.

Source: Canva


I grab some toilet paper and blow my nose, because we have run out of tissues. It feels scratchy but I don’t care. I go into his room and I pick him up, making gentle soothing sounds as I try not to let my tears soak into his sleep suit.

We sit down in the chair and I unclip my singlet to offer the only comfort that I really know how to offer. He takes it. I wish I’d brought the toilet paper with me, because now my nose is dripping on him as well as my tears. I turn my face away and grab one of his t-shirts to wipe my eyes and nose with. I feel ashamed for doing this, but I will wash the t-shirt tomorrow. I love him so very much; this tiny human. But I also just want him to go away. I cry harder as I admit this to myself. I feel like I have lost who I am. I haven’t slept properly for over a week now, and I’m not very rational or nice to be around. I start to wonder if maybe my family would be better off without me around. Maybe they’d be happier. I shoo this thought away as I know deep down that this isn’t true. I’m feeling very confused; how can I love someone so much and yet want them to go away so much as well? I must be a bad mother. A shitty human. I feel sorry that this baby has me for a mum. I feel like I can’t do anything right.

Then he looks up at me with those little eyes and I melt inside again. I touch his cheek as he closes his eyes and goes to sleep, then I place him down in his cot gently and go to bed without a shower again. This is the shadow time. I’d like it to go away now. Post natal depression is dark and real and awful. It robs you of everything.


I lie in bed and I can’t sleep, but I close my eyes anyway and hope tomorrow might be better.

……………………………………………………………………….

This was written on a particularly difficult evening, when things indeed were very dark. I got in touch with postnatal depression network here in Nelson, and I joined a support group. That group allowed me to connect with other mums in a nurturing, healing environment (with trained facilitators) and we’ve remained in touch. If you can relate to the feelings expressed in my story, then please do reach out to someone; you aren’t alone, and it does get better!

You can contact the postnatal distress centre here http://www.postnataldistress.co.nz/
or visit https://pada.nz/
Or the depression helpline on 0800 111 757 Or free call or txt 1737 to talk

© Bec Duff and Crying Over Spilt Milk Gastric Reflux Support Network New Zealand for Parents of Infants and Children Charitable Trust March 2020.

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/support-services-helplines-national-helplines-2/ – Jenny and Roslyn

Harper’s Journey- Awareness Week 2020

When our little girl was born, we were so excited but I also was under no illusion being a parent was going to be easy. Harper was unsettled from day one, she fed constantly, and I felt grateful I could breastfeed, but this meant she fed every hour, day and night. I was told I had to stretch her out, she was snack feeding. Then the screaming, this would go on for endless hours.  I was told “this is witching hour” and “she will grow out of it”, then we were told “oh it’s colic”. The amount of times I got told “it’s hard being a first time mum”, made me feel like I was doing something wrong, my baby was normal but I possibly wasn’t coping. 

When Harper was 3 months old we were given a script for reflux medication in the hope this may help a bit. We never noticed a change, her doses were increased but we simply were led to believe we just had to manage her symptoms, with no real help, support or guidance. At 6 months of age, my milk stopped coming through and suddenly I couldn’t cope anymore. We sought help to get Harper onto a bottle and support with her sleep. After a week at a facility, trying to teach Harper to ‘cry it out’ we were referred to the mother craft unit. They all believed Harper was just stubborn.  We spent our time at mother craft and returned home with no further answers or help. No one really seemed to believe she had reflux, or if she did it was just mild and not the reason for the sleep and feeding issues.

We continued to struggle. At 10 months old Harper began projectile vomiting almost daily. This rapidly increased to her having periods of vomiting 6 times a day. We were sent to hospital numerous times because she would become dehydrated, but no one would listen to us. Harper stopped eating and was losing weight. This went on and at 13 months of age she had dropped down to just 6kgs. We were finally admitted, but the next day we were told by a paediatrician that Harper had reflux and we had to manage her symptoms at home. I lost my mind! How could they say it was ok for a child to continue to loose weight while her symptoms were getting worse? We demanded a second opinion, and a pair of young junior surgeons came to see us. They quickly agreed that this is not ok and we all needed some answers. They booked her in to get an endoscopy done the next day and said they would take some biopsies if needed. They also said they would do a pH study. We were relieved to hopefully, finally get some answers.  Those 5 days were the worst of my life, Harper reacted to the anaesthetic and needed sedating, her hands were bandaged, and she was so unwell. I did not sleep for most of the 5 days we were up there. The results finally came back and there was significant damage done to Harper’s stomach, blood staining and the beginning of what appeared to be ulcers. The PH study showed a high reading for reflux. We were simply given a higher dose of her meds and sent on our way again.

This was all over a year ago, Harper turned two in February and we still struggle with her symptoms.  We have 6 monthly catch ups with a paediatrician. We have worked so hard as her mum and dad to build a better relationship with food, to try and read her signs and do what we can to ensure she lives a normal life. Her vomiting has slowed down, but I still live in an anxious state about my girl’s health. I really struggled with the aftermath of having such a sick little girl, and my doctor suggested at one stage that I may post traumatic stress disorder from it all. To be honest I wouldn’t be surprised. GRSNNZ has helped me by being a place where I could relate to others. No one else I know has any idea what reflux really is. For those that suffer it is much more than just a “spilly” baby. I wish I had known about the group earlier as we felt so alone when going through the worse of our journey. The other families in this group are so amazing and very strong, always advocating for a better life for their young ones. I am proud to be part of such an awesome group.

I think one of the hardest parts is that reflux can appear as an invisible disease, from the outside Harper looks like a healthy and happy little girl, it makes it hard for others to believe what we all live with, the sleepless nights, the stress about food. But I also know that Harper is so strong and such a fighter, and I really hope that stays with her for life. 

© Tarsh and Crying Over Spilt Milk Gastric Reflux Support Network New Zealand for Parents of Infants and Children Charitable Trust May 2020

3 Girls, 3 reflux Journeys- Awareness Week 2020

Our families reflux journey started in 2003 when my eldest was born, she was 6 weeks early due to pre-eclampsia and weighed just over 4 pounds. Things ran smoothly for a while and I remember reading an article on reflux in Little Treasures magazine and thinking thank god my daughter hasn’t got that; little did I know. First a little bit of background, my partner was a dairy farmer and we were in the coldest, most awful house when miss was born. Having a reflux baby and an awful house definitely put a strain on our relationship. To be fair the first year with her is a bit of a blur, nights spent rocking her in the lounge; doctors and hospital appointments which really didn’t help and me left thinking I was a neurotic first time mum who couldn’t cope. I breastfeed for a little while but ended up formula feeding as she was so inconsistent and I needed to know how much she was getting, but she always gained well. She was medicated but it did very little. Our saving grace was when she ended up sleeping though the night at 4 months, but she never slept much during the day. Those first few months with her were very difficult for a first time mum. Starting solids and walking were the milestone that helped her most.

But the teenage years brought back her reflux and after my sister found out about the gene mutation MTFHR, we got my daughter tested and sure enough she was a carrier also*.  It is still an ongoing battle for her but we manage her condition with the support of a naturopath.

My miss middle was born in 2007, we waited so long because of the tough time we had with our first and I didn’t want a repeat. Luckily her reflux wasn’t as bad, nothing like my eldest or youngest. She was a spiller and under medical advice I put her on medication and thickened formula which helped but she still stained the paint with her vomit. She was a breeze compared to my first and so we were lulled into having an another.

2009 my youngest was born 5 weeks early a little over 4 pounds, I was so anxious she would have reflux.  I knew pretty much in the first 2 weeks that she had it, by then I knew what was what with reflux. This reflux was a torture like no other.

I have vivid memories with my youngest, we were still dairy farming so were somewhat isolated. I did have a supportive good friend out where we lived and an awesome doctor, but we moved after 3 months to another farm then again a month or so later to another very damp house.

So we started miss on medication, but it didn’t really help. she was not gaining weight as she should, she was deemed failure to thrive but we struggled to get into the Paediatrician. At 5 months she was admitted to hospital for 5 days due to low gains and my tiredness. The one thing that sticks in my mind about this time was the amazing nurses I dealt with and how supportive they were.

It was then I decided after nearly 6 months to stop breast feeding, I was gutted, I really wanted to carry on, I felt like a failure this time as I knew she was my last bubba. She was put on Neocate and had a PH test for her reflux, we were finally getting somewhere.  I swear I carried her in a front back everywhere apart from the shower, that’s how unsettled she was, I barely slept and swear I am still catching up on sleep now (that’s my excuse and I am sticking to it lol)

At 13 months she was only 6.81 kg so she was a tiny wee thing, and then she started having breath holding spells. She had been in and out of hospital due to these, ear infections and bronchiolitis. This was a bad year for her and my miss middle; we were back and forth to the hospital with different issues partly due to being in an awfully damp house.

We were advised that reflux surgery was a good option for her, which was great news but scary at the same time. I was living on not a lot of sleep; I’m still amazed at the cool TV shows that are on in the early hours of the morning! She would sleep on me propped up.

Those 18 months were the worst, with 3 kids tag teaming each other with illnesses. There was little sleep and I did not like asking for help, so I struggled on.

At 18 months we drove up to Christchurch for the long awaited surgery, Ronald McDonald house was fantastic. Watching her go in to surgery was hard, and my partner was the one with her when she woke up thank god because she had a breath holding spell when she came around, I would not have coped well with that.

Apart from that it had gone well, but then the poor poppet got Rotavirus so she had to be isolated, and of course she couldn’t vomit; it was awful. We got put up at a motel as we had to move from Ronald McDonald house, they were fantastic. We were there a bit longer than first expected but she came right and in a few days we got to go home.

The following year we moved to Australia and although she was still a tiny wee thing she was getting better, we ended up seeing an endocrinologist in Australia and had a fantastic Paediatrician and doctor, she was still little but they advised us she was fine.

She is now a happy healthy 11-year-old, who has had no more reflux problems, not to say that it won’t return, as 3 out of 5 of our family suffer from GORD.

A lot of my girl’s issues I feel have been due to MTHFR, which makes so much sense now. Doctors don`t really know too much about this which can be frustrating.

I was so grateful to find the support of GRSNNZ was there when I needed it. It was always good to know that I wasn’t the only one going through it and if I had any questions or doubts they were always there to help as much as they could. My girls are now 11,12 and 17 but the reflux memories will never ever fade as it was the most challenging years of my life, but so worth it.

 

*Note: MTHFR stands for Methylene-TetraHydroFolate Reductase. It is an enzyme that converts folate you eat into the active form (5-Methyltetrahydrofolate). The MTHFR enzyme affects this at the last step. So if you have a mutation in the gene then it’s going to be affecting how much active folate you have available. Source: https://mthfrsupport.com.au/what-is-mthfr/

© Ruth and Crying Over Spilt Milk Gastric Reflux Support Network New Zealand for Parents of Infants and Children Charitable Trust May 2020.

Day 1 #NationalInfantandChildGastricRefluxAwarenessWeek 2017 – Looking after yourself…

Competition run from 31st May to 3rd June 2017 to win one of our cups.

Members were asked: Post the way you have looked after yourself whilst surviving infant/child gastric reflux.

  • I would get my husband to take the baby when he woke in the morning so I could get a few extra minutes of sleep before getting up for the day.
  • My first, I’m really not sure how I survived?! My second, an electric swing was our best friend, worked well for her, also had a much more helpful partner to take turns pacing the house.
  • I nap when ever I can. Screw the house work or jobs. Sleep is more important.
    Ive also had a few massages which help heaps when im so tired that I get angry easily.
    Also meal prep in advance for my lunches and snacks. It means i can just pull good food out easily while comforting my screaming child.
  • A cleaner, 2 hrs a fortnight makes such an amazing difference! Sitting in a clean house rocking a baby is so much nicer, and worth the investment for us 
  •  I decided it was completely fine that I stopped cleaning the house while we were struggling with this 
  • I’m loving the suggestions. It is 16 years since my girl with Gastric Reflux was a baby so how I coped is a bit of a blur. I had fantastic neighbours who would help out or visit. They were the third set of “grandparents”.
  • My first was attached to me her entire first year so not a lot of relaxing there! My second we bought a natures sway hammock which enabled me to put him down, Amazing! Plus having mother in law come and look after number one for a day, priceless 
  • I bought a nature sway hammock  So I could sit down with a coffee once in a while.
  • I had a gorgeous teenage girl who would come in three afternoons a week to help look after my older two, or she did errands for me, or I got a nap in.

Origin:https://www.facebook.com/NationalInfantAndChildGastricRefluxAwarenessWeek/posts/1593381800703218

Day 2 #NationalInfantandChildGastricRefluxAwarenessWeek 2017 – At moments like these…

Competition run from 1st to 4th June 2017 to win one of our cups.

Members were asked: At moments like these…show us your humorous picture that depicts a reflux moment or share a short paragraph about a funny reflux event.

  • The kids learnt pretty quickly to move the fountain when it started. Fortunately only a little milk got on his face, his top was not so lucky 😂 
  • Thinking you might sit down and have a cup of tea. Must have been a bad day, didn’t get the milk in or the bag out!
  • Silent reflux is not so silent after all…….poor nana. Always happens when we make him laugh 😂 (Video included.)

Origin: https://www.facebook.com/NationalInfantAndChildGastricRefluxAwarenessWeek/posts/1595125893862142