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

Day 4 #NationalInfantandChildGastricRefluxAwarenessWeek 2017 – Support

Competition run from 3rd to 6th June 2017 to win one of our cups.

Members were asked to: Share a picture or moment of your support person (significant other/grandparent/friend/family member) who has been on this journey with you and your child.

  • Unfortunately my biggest support can’t have photos put on social but I love them anyway 💕
  • This is my husband and our kids. Before this photo our youngest had been crying non stop for hours. So hubby bundled us into the car and took us for a walk at the beach.
    Sometimes a change in environment can help not only your reflux child but also the parents and caregivers state too.

    • My biggest support is my husband. This is us trying to keep our little girl happy after she had a PEG inserted due to reflux being so severe that she wouldnt eat (reflux sucks!) He has been so amazing (dispite wanting to faint at even a conversation about anything medical 😂) and has adjusted amazingly to having a tubey baby. Very proud of him!
  • This is my husband who can always tell when I am being stretched too thin and steps up and looks after both of us. Anything from running us a bath to singing the pink panther tune on repeat for ages as it calms our son.
  • A lot of people have bad experiences with their health professionals but I always found my GPs, emergency drs and specialists to be kind and caring, and listen to me even when pressed for time. A little bit of support and encouragement and empathy goes a long way when you have a sick child and you’re stressed out. I have always felt so well looked after by the health professionals!

Origin:https://www.facebook.com/NationalInfantAndChildGastricRefluxAwarenessWeek/posts/1598394456868619?comment_id=1598428073531924

(Some images removed.)

Day 3 #NationalInfantandChildGastricRefluxAwarenessWeek 2017 – Unhelpful suggestions/advice

Competition run from 2nd to 5th June 2017 to win one of our cups.

Members were asked to: Share the most unhelpful suggestion or piece of advice you were given about your infant/child with gastric reflux or associated condition.

  • To formula feed because my breast-milk was upsetting their tummy. 🙄
  • I had a Plunket nurse tell me that my daughter had such bad reflux because I had hyperemesis – as if I didn’t feel guilty enough.
  • One person told me if I just fed her cold boiled water when she cried then she would stop waking during the night. (She was 4 weeks old at this point, and had been in hospital for choking from reflux.) Also that instead of breastfeeding I should give her straight cows milk with formula in it because that’s how she did it💔 and most unhelpful suggestion was “reflux isn’t even real.  It wasn’t around when my babies were little.  It is made up to make an excuse for bad behaved babies who need to learn.
  • “Just feed him (breastfeed) like a mother should”. Hmm would if he would suckle. Severe oral aversion due to misdiagnosed reflux – thank you Mr GP.
  • “You just need to get some sleep to feel better and let him grow out of it”… Thanks GP who clearly has never had a baby, let alone one with reflux.

Origin: https://www.facebook.com/NationalInfantAndChildGastricRefluxAwarenessWeek/posts/1596364183738313

Tautoko, Matauranga me te Whakamana i te whānau me ngā tamariki

The Gastric Reflux Support Network NZ supplies brochures to Health Providers or other Services that support families coping with Gastric Reflux. This explains what Gastric Reflux is, a few simple tricks, the support GRSNNZ offers and our contact details.

We have just updated the brochures and are waiting on quotes for the next printing run.

The Trustees have decided to include a Maori translation or phrase on our brochure to show our commitment to the bicultural heritage of Aotearoa.

After seeking advice and a lot of discussion, we have decided on “Tautoko, Matauranga me te Whakamana i te whānau me ngā tamariki” which combines words from our mission statement and name.  This translates to “Support, Education and Empowerment for families and their children”.

Today, I have added this phrase to our website as well.

As we approach National Infant and Child Gastric Reflux Awareness Week from 31st May to 6th June, let’s think about how we can Support, Educate and Empower whānau.

Tautoko, Matauranga me te Whakamana i te whānau me ngā tamariki

PS:  Our brochures can be ordered using this form.

‪#‎NationalInfantandChildGastricRefluxAwarenessWeek 2015‬ Story 4

My first child was a dream, eat sleep play.

My second baby was a nightmare! Screaming the moment he was born. Sleeping upright on my chest for ten weeks!

We couldn’t find an answer, losing our minds! Five doctors later, high doses of medication for gastro-oesophageal reflux disease and specialised formula we had a baby we could cope with, only just.

He spilled until one and a half, was on formula and medication until three years and is now a beautiful amazing boy at 8 years.

It was worth every minute of personal pain and we risked it again by having son number 3 who was a dream like the first.

Keep your head high, things will be okay, struggle through but never give up!! Your baby will grow into a beautiful human being.

View the original #‎NationalInfantandChildGastricRefluxAwarenessWeek‬ 2015 Story 4

© Melissa, GRSNNZ Member and Crying Over Spilt Milk Gastric Reflux Support Network New Zealand for Parents of Infants and Children Charitable Trust June 2015

#‎NationalInfantandChildGastricRefluxAwarenessWeek 2015‬ Story 5

I just looked back and re-read the archived version of daughter number 3’s story. This is the edited version of the end of it which might be useful for those dealing with Child Gastric Reflux

At the time of writing this, she was almost four years. She was almost seven before she hadgemma31 her Nissen Fundoplication surgery so it was not something we rushed into.

“We have just reduced and stopped her medication to determine if she still really needs it, and she may be referred for a surgical opinion if reflux continues to be a problem. She does seem to still have reflux though, and we wonder how long she will be able to stay off medication.

Some of the ways she describes what she feels are: “my tummy is hot”, “my tummy has sick in it” and “my tummy feels sore”, “sick” or “unwell” as well as the obvious sounds of refluxing occurring and sore throats.

I have never been happy about the thought of surgery to cure her reflux, but over the last few months and with all the research and reading of other’s stories (both negative and positive) I at last feel peaceful about this possibility. Whatever happens now we know that reflux is likely to continue be part of her life, but that as she gets older she will be able to tell us more clearly what is happening.”

Written by Roz, Regional Coordinator for © Gastric Reflux Support Network New Zealand 25/01/2004.

View the original #‎NationalInfantandChildGastricRefluxAwarenessWeek‬ 2015 Story 5

© Roslyn Ballantyne (RN), National Coordinator 2013 – 2020, Crying Over Spilt Milk Gastric Reflux Support Network New Zealand for Parents of Infants and Children Charitable Trust June 2015