March 29, 2017

My post today is very targeted (sorry fashion friends) so all you mummas and specifically mums who have dealt with a baby with silent reflux, or think their baby may be struggling with it this is for you.

My post today is very targeted and long (sorry fashion friends) so all you mummas and specifically mums who have dealt with a baby with silent reflux, or think their baby may be struggling with it this is for you.

Firstly, I am not a doctor. You obviously, all know this, but I am stating the obvious, as I am not claiming I am an expert in the field.

I am a first time Mum that struggled with Aston, and I actually found the most help and comfort from reading personal experiences online, chatting with friends and reading blog posts.

I first starting writing this post in June last year (yes, yonks ago) but I kept putting it off, going back and forth in my head if I should or not. I don’t want it to come across as a whining post or that I am complaining that he was a difficult baby. It’s not his fault. He was in pain and the only way for him to express himself was to cry. I am beyond grateful to have him, he is my special boy, but I think it is important to share my honest story and feelings.

Before having Aston, I had no idea what ‘reflux’ or ‘silent reflux’ in babies was. I thought it was just like the reflux us adults get when we eat spicy food. You know the type that causes a little discomfort and then it passes.  I think back to conversations I had with girlfriends of mine years ago, they struggled with their babies or told me about their friends’ babies having reflux and at the time I remember thinking how horrible that must be, but I had no idea what it actually meant.

Aston was a really fussy baby from day dot. You know how a lot of babies are in that sleepy ‘unawaken’ newborn phase in the hospital and they just sleep a lot? Our boy never went through that stage.

It started from that second night in the hospital, screaming all night long and this continued for months and months. Our baby was the one you could hear in hospital screaming on the top of his lungs during the night while Jim and I walked his bassinet around the hospital corridors trying to get him to sleep.

Aston was just one hour old here, and yep I was totally besotted with him. Look at his little smile (melt)

THOSE ZOMBIE WEEKS.

The first four weeks with Aston was a blur, I am sure this is no different to how lots of new mums feel. Everything is foreign and you are trying your best to find your way. At the same time, I wanted to enjoy this incredible time with him, but I remember feeling scared, overwhelmed and unsure if I was doing a good job.

Thank god for Jim and my family (especially my mum) who were so supportive and there every step of the way but Aston would cry non-stop. All day and night. Sitting here now reflecting it is certainly a lot easier to write these words, but in all honesty, it was the hardest thing I have ever had to do and the feeling of not understanding exactly what was wrong with my little man. Let’s also add those crazy mum hormones, nipples bleeding and mastitis. I was not in a good place.

I did feel a lot of pressure on me. I think being a mum you always feel a lot of responsibility on your shoulders even if you have a huge support system.

He was constantly in a lot of pain, it seemed like it was more than just the normal baby fussy cries, but being a first-time mum, who was I to say what was normal or not? I had nothing to compare it to and I felt like if I told people he cried a lot and wouldn’t sleep at all then it was a sign of weakness on my behalf.

My Mum and close family also thought he was far more irritable than your average baby. He would scream for hours with a bright red face, clenched tight fists and nothing would settle him. Even when he slept he had a painful looking screwed up face. If he wasn’t sleeping, he was screaming.

Two weeks old here. I remember this day, he wouldn’t take to the boob at all and I was still on antibiotics for mastitis

YOU KNOW YOUR BABY BEST, FOLLOW YOUR GUT.

It was strange as when I went to maternal health checkups or the doctors that followed he was mostly calm in those appointments. Of course, I was happy that he was calm for once, but it was frustrating as they only see your baby for thirty minutes max, so they don’t know what they are like for those other twenty-four hours a day, so then I felt like maybe I was overreacting because I was a ‘first-time mum’.

Aston was thriving at all his checkups, he was a big boy, loved his milk (would guzzle it down super fast, I later found out that this was a symptom of silent reflux) and growing really well (98th percentile) so when I explained to them what I was experiencing (Aston’s non-stop crying, screwed up face and fists, harsh coughing, extremely fussy on the boob, not sleeping at all) I got the response with a little laugh that motherhood is never easy and babies do cry a lot. They said it was probably colic, and it should get better by the time he was three months.

I then doubted myself and thought I needed to harden up so I didn’t go into a lot of detail with them how hard I was finding it. I knew motherhood wasn’t meant to be easy. It was only early days so I thought it would get better.

But I knew that something wasn’t quite right with my boy and his screams weren’t your usual baby cries he was screeching in pain.

Breastfeeding was also a nightmare. He was always really uncomfortable when feeding and I thought what I was eating could be upsetting his tummy. He was so restless, latching on and off and also very frantic on the boob. I got mastitis a week after I had him and had to take antibiotics so I thought these antibiotics were still in my system and the reason he was so upset, as I thought they may have affected his sensitive tummy.

I cut out all dairy, coffee, sugar, etc and it seemed to make a big difference, but it was so hard to maintain the no coffee. I later found out at the doctors that babies with silent reflux get affected by the protein and dairy in certain foods and it can stir up the reflux (I have detailed below which formula I have used once I stopped breastfeeding that was really gentle on his tum)

I know you shouldn’t look at others, but I would compare Aston to other babies, friends babies and they weren’t unsettled like him, they didn’t scream with a red face non-stop. They slept in their cots or in their pram.

Time passed and if anything, he was getting worse.

THOSE LONG NIGHTS

The nights were long, and I mean really long.

It would start at 5 pm, bath then his feed, but it was impossible to settle him to sleep after it. He would scream in agony.

I would try to rock him, put him on the boob again, walk up and around the house, juggling and jiggling him, swaying him down the hallway, singing every song to get him to sleep. (twinkle twinkle little star and ‘Aston’ the snowman -yes he loved when we swapped Aston for Frosty- were his favourites)

I would then finally get him to sleep in my arms and gently put him in his cot, after thirty minutes he would start screaming again and it would be time for his feed again, as it took so long to settle him, this cycle would go on all night until the morning. It was torture, I was only getting forty minute catnaps night after night.

On the super hard nights when I was just too tired. Jim and I would put him in the car, driving him around the streets until he would finally nod off.

There were times when I would just cry. I couldn’t help it. I didn’t even feel sad (which I know sounds ridiculous because I was crying) but I couldn’t help tears pouring down my cheeks, I think it was my body dealing with the exhaustion of no sleep all night and the feeling of helplessness, as I didn’t know what to do to help him.

After his morning feed (around 10 am) was when he was the calmest and I loved those special times with him and at these times I thought maybe this motherhood business isn’t too hard, but as the day progressed he would become more unsettled and hell would start again.

I found it really difficult to leave the house because Aston wouldn’t settle in the pram, he couldn’t handle lying flat. So both the pram and his cot were the enemies. In the pram, he would scream so much that I would have to pick him up out of the pram and walk him upright in my arms. I was worried when visitors came over because if he was awake, he would be screaming.

GETTING HIM ON A ROUTINE

I had read Tizzie Hall’s, Save Our Sleep when I was pregnant from front to back and I was adamant I was going to get Aston onto a routine, trying to get a baby with silent reflux on a routine is not easy, it’s nearly impossible. I think her book and advice is amazing as it did finally start working when Aston’s reflux got better and older, but I wish I didn’t put so much pressure on myself to get it perfect as every baby is different.

You know the drill what works for one baby, won’t necessarily work for the next and the number of times I hear. ‘The reason ‘Sue’ has a good baby is because they are really chilled, they are just such amazing parents’

Trust me, ‘being chilled’ has nothing to do with it when you have a baby that is in pain and irritable.

It really frustrates me, when people say this to me, as I feel it’s their nice way of saying, maybe, you are the reason that Aston has is irritable. (and for the record Jim and I are both very relaxed)

AND THEN A HERO CAME ALONG

After chatting with friends and family, we decided it was time to get a sleep nanny, just one night a week. I needed help and was struggling to function.

I was recommended an incredible lady, Daani and she honestly changed my life. She doesn’t have a website but you can contact her via text or phone 0466 427 289.

She has worked as a midwife nurse for over twenty years at the St Vincents Hospital (so she has seen it all) and now works as a sleep nanny full time. She is so qualified and knowledgeable about babies, as she has worked as a midwife for so long and she taught me so much. She stays up with the babies all night long and monitors their behaviour.

As soon as she stayed over, she was certain Aston had severe silent reflux. As she could see and hear him struggle with the acid going up and down his tract. Finally, an answer. I googled like crazy and Aston fitted the ‘silent reflux’ description to a tee. I didn’t initially think of reflux because he wasn’t spitting up, but silent reflux is different, they have no spit up.

So think of the worst possible heartburn you have ever experienced, but then put it in a newborn babies body #ouch

The ring of the muscle between the oesophagus and the stomach is not yet mature in babies, so it is unable to hold stomach contents down. With silent reflux babies then swallow the stomach contents. The problem is that the stomach contents are acidic, so it burns on the way up and back down and is super painful for them.

I ended up making a doctor’s appointment and explaining what I thought and he assessed Aston and said he had silent reflux.

Daani was incredible at giving me so many tips to combat his silent reflux and she ended up coming a few times a week for a little period of time to work with me to get him on a routine and finally sleeping, woo hoo!

Aston’s symptoms: 

  • Really frantic to nurse at night, but then would pull off and on, in pain and scream, then be frantic to nurse again and this would repeat. Feeding was really hard.
  • Hiccups, that would last for long periods and seemed aggressive and continuous.
  • Full on crying and screams. It was always worst from 5 pm onwards and continued all night long.
  • Clenched fists and stiff body and red screwed up face
  • Only slept for really short 40-minute bursts on and off
  • Nappies were always a weird consistency and really green
  • Bad smelling breath
  • He would feed frantically fast, and would continually drink bottle after bottle or stay on my boob all the time.
  • Lots of coughing that was really harsh.
  • Trouble breathing if laid flat.

My tips to help reduce silent reflux:

  • Aston started taking Losec, it was prescribed by the doctor. It actually took a long time for Losec to work, around four weeks and only really kicked in when I used it in combination with these other techniques below. Aston had to stay on Losec until he was seven months old. We tried quite a few times to wean him off it as I hated him being on such strong medicine so young, but I hated seeing him in pain too, but when we would try to wean him, he would revert back.
  • Gaviscon and Mylanta, we worked the Gaviscon into a paste and gave it to Aston before his feeds
  • We swapped his formula to Goats milk as it is far more gentle on the stomach, he was only taking about one bottle of formula a day until I stopped feeding at six months.
  • At six months we then moved him to Aptamil Allerpro gold +- which is gentle on babies with a protein allergy, so perfect for babies with silent reflux
  • I saw the incredible Dr David McRae in Armadale. Yes, he is a chiropractor, which I know can freak people out and I don’t agree with ever working into babies tiny bodies like that (no back cracking!!) but David is amazing, he explained the way they’re growing in our womb can affect their digestive systems so he massaged Aston’s body and taught me techniques to turn his legs in the bicycle motion every time I changed his nappy to get his digestion moving. We saw David a couple of times a week, then once a week for 8 weeks and it seemed to really help with his pain.
  • Prop the cot up, we used three thick books, so it was on a slight angle, which helped to keep that acid down.

So here I am now and Aston is sixteen months old and thriving. As soon as he turned seven to eight months his silent reflux seemed to disappear (EDIT, I forgot to add this when I first posted, but I think the reason for Aston getting better was also because he was eating a large amount of solid food at every meal time. We introduced solids when Aston was three and half months old to help with his reflux. Solids helps to keep the acid down)

So please hang in there it does get better (and I never thought I would say that)

And again, this is my own personal experience and we all know that every single baby and person is different in this world but if one person can identify with something in this post that could help them, then I would be more than happy.

Remember, never feel apprehensive to consult your doctor, because no one knows your baby better than you do.

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  • Ange

    Thanks so much Nadia for this well-written and heartfelt post. I have 21 mo boy/girls twins and a 4 yo. When the twins were born the female twin, exhibited most of the symptoms that you described

    • http://chroniclesofnadia.com.au/ Nadia Bartel

      Thanks for reading x

  • Ange

    Whoops hit send too soon! I understand what it’s like to get zero sleep for months on end due to this condition and having twins made it totally overwhelming. For me it felt like a ‘war’ from which I couldn’t escape. Thx so much for sharing. Best wishes to you and your beautiful family x o

  • http://carlacram.com/ CarlaC

    I don’t follow your blog regularly but a friend sent me your link as my son has severe reflux disease. I just want to say, I understand how tough it is and what you have been through. I do want to point out though that goats milk is actually still dairy and most babies that are sensitive to dairy, will react to soy and goats milk as well as the proteins are similar. I also want to say that sleep training does not work for reflux babies as they are in pain. A baby in pain needs love and cuddles and for parents to just surrender to its needs. There is a lot of evidence out there that goes against sleep training and I would ask anyone considering it to just read both sides of the argument. Sleeping through the night at a young age isn’t actually biologically normal for a baby, and while it sounds good (believe me I have a 23 month old who is still medicated for reflux and 6 food allergies and wakes 3+ times a night), it isn’t fair to expect babies to sleep all night at a young age and especially if they have food intolerances or any pain or medical condition. Thank you for sharing and I hope that your boy continues to improve and thrive.

    • http://chroniclesofnadia.com.au/ Nadia Bartel

      I agree with the Goats milk, it was good for quite a while but Aston did become even better when I put him on the Aptamil formula I mentioned above once he was a little older. I also believe a baby in pain needs cuddles, we never let him cry it out or did controlled crying until after he was 13 months and even when we had the sleep nanny, she patted him to sleep. Aston always came into our bed, when he was having a really rough night and he only started sleeping through the night properly at 14 months so I understand what you are saying but I think it’s really important to try to get them on a routine. We found it really beneficial for Aston, especially with his reflux

  • Jacqui

    This resonates all to well with me… our first born came our screaming and was terribly unsettled for the first 3 weeks before we too had Daani over for a couple of nights to assess what was happening and to give us a much needed good nights sleep. She was our lifesaver! Daani kept me sane when everything around me felt like it was going insane! Izzy had all the same symptoms as Aston and thank goodness for Daani having the wealth of knowledge and experience to identify that Izzy had silent reflux. I too didn’t know anything about silent reflux. My nephew had reflux and would projectile vomit but as a first time Mum it didn’t even occur to me that silent reflux was a thing or that it was the cause to Izzy’s constant screaming. My poor darling was in so much pain and at first I blamed myself for her unsettledness – I kept saying to my husband “why can’t I settle her? I’m her mummy”. So to have Daani’s reassurance and guideance to first identify the cause and then advice to help treat it made all the difference. We made similar changes to you but we chose Aptamil AR (anti reflux) Formula which is a thickened formula to help line the gut and stop the acid coming back up the esophagus. This seemed to make a big difference with Izzy being more settled after each feed. Keeping her upright for 20mins after each feed also helped and having a proper eat/sleep/play routine. Thank you so much for sharing – I’m sure writing this brought back some heartbreaking memories, as it did for me, but it’s reassuring for those Muma’s out there that help is always there if needed x

  • Suzie Plush

    Such an incredible article that resonates so much with me! I feel like our journey has been indentical! From the 2nd night at hospital screaming for hours. Having a private sleep consultant diagnose the condition after 3 long months. Losec, ‘bubs’ goat milk formula & chiro treatments. Every single thing you described we tried! So grateful you have used your platform to spread awareness!!!! I have literally sent your article to 50 people. As a Psychologist I feel there needs to be more education & support for new mamas. Literally the hardest season of my life! So grateful my lil man is now pain free & a great little sleeper! He is almost 10 months old & I’m loving this season! I wish I had this article 10 months ago! Thank you for sharing your journey!!! X

  • alexie morgan

    Reading your article bought a tear to my eye because this is the exact journey I am on with my beautiful 3 month old boy. And if I had one more person respond to my question of why does he cry so much with he is just a baby, all babies cry, I was going to walk out.
    I knew something wasn’t right, but it took me to video his crying and regurgitating noises and playing them back to my MCHN, paed, and GP for someone to finally believe me.
    Add to this colic and finally a stint at Masada for me to gain some sort of normality in my life and to get Max sleeping for more than 20-40 mins.
    I will look into the goats milk formula now and aptamil as still there are many days he cries for no apparent reason, despite me cutting out dairy, cafein, sugar, nightshades, following the anti colic diet, osteo, losec and wilby’s colic mix.
    Poo results also gave me no real reason for his unsettled behaviour but still I know there has to be more I can do to help my boy.

    Thank you for making me feel not so alone on this journey where all I want is to enjoy my baby and relieve his pain so that he is happier every day

    • Summer Farmer

      Hi Alexie – my now 3 year old Oli is Aston but on a whole other level! I learnt the hard way he had severe food intolerances and sensitivities all from my own research and findings and these are the key things I would definately consider they worked for us …
      – take a digestive enzyme if you are breastfeeding so nothing you eat reaches their tummies
      – both take a probiotic (we used biotic Jnr on Oli)
      – invest in Colic Calm this stuff is AMAZING!
      – see an osteopath / chiropractor
      – if you are open to it see a kineseologist who performs food intolerance tests, best thing I did
      – we had to put Oli on a formula called Neocate, it’s an amino acid based product which tastes horrible but he drank it the little champion!
      – try and find a great health food / nutritionist. I was so fortunate to have a child health nurse and qualified nutritionist work at our local health food store and she was incredible with supplements for us both and starting foods as we now know Oli is fructose, dairy, lactose, wheat, rye and histamine intolerant to name a few of the big ones!
      – lastly we co-sleep and bedshare so I can atleast function and cause I just love it!

      Keep trusting yourself and Love your baby! Don’t listen to the people who tell you sleep school or the child is just playing you or not hungry or rejecting the boob or whatever other horrible things I got told – you know your baby and there are so many of us who have been through this who can provide even a little advice but always support!!! Xx

      • http://chroniclesofnadia.com.au/ Nadia Bartel

        Great tips! Thankyou x

        • alexie morgan

          Thank you both so much, my favourite thing about this motherhood journey is that so many other mums just want to help and I love this.
          I am going to start with aptamil today to see if it helps and then I will know better if it is more dairy intolerance.
          I have heard of neocate and also getting on to solids earlier, I was going to start around 4 months but I’ll offer it earlier and if he is interested he can start.
          I am yet to see a naturopath but max is taking a probiotic daily and I try my best to watch what I eat, but there is nothing enjoyable about having an almond milk decaf coffee ;)

      • alexie morgan

        Hi Summer, thanks for your tips, did the kinesiologist test for cows milk protein intolerance?
        If so can you give me their details.
        I know he is not lactose intolerant but wondering if dairy.
        I did go off dairy for a month but didn’t notice a difference.

        Thanks

    • http://chroniclesofnadia.com.au/ Nadia Bartel

      Yes, def try the Aptamil formula, we found it great. It is a constant battle, even when Aston was on the losec, and we were doing all those other points I mentioned above, there were still times his reflux really persisted, I just found the older he got, and stronger, along with more solids, he started growing out of it. Hang in there, it doesn’t feel like it is ever going to end, but it gets so much better every month, the older they get

      • alexie morgan

        Hi Nadia, did you continue breastfeeding or switch to formula completely? I bought the aptamil allerpro last week and I breastfeed in the day but give 1 bottle of formula at the dreamfeed so my partner can do it, but since then he seems to be constipated.
        Is this what happened to Aston too? I’m not sure if it’s from the formula or something else.

      • Tania Marano Pace

        Hi there, did you try the aptamil formula? I just did a day of it in my three month old boy and he spewed up more on it and screamed down lygon street with a sore tummy. Doc says it’s because it’s lighter and thinner so it’s harder for milk to stay down. I have now reverted back to belamys organic for a couple of days to see if the losec kicks in! This has been the most horrible experience!! Such a guessing game… next step is alfare formula and then thickener! Aaaaahhhh.

  • Bec

    We have been through this same scenario with our little girl with no help, support or sympathy from family. In fact my midwife sister labelled me as a bad mother (to my face) after returning from another urgent Dr’s visit from having blood in her poo. She also vomited blood several times because of the silent reflux.

    We struggled to get any medications into her and she wouldn’t properly take solids until she 12 months so it was hell, especially with an active toddler.

    We thought she had grown out of it (finally) but we have 4 teeth coming which seems to have brought it back again!

    Thanks for sharing, love a realistic view on parenting.

    • http://chroniclesofnadia.com.au/ Nadia Bartel

      Thanks for your message. Totally understand where you are coming from. I think it is really hard for other parents or doctors/midwifes that have never experienced this with their children to understand what it is like. They aren’t living it every day.

      You are definitely NOT a bad mum.

      Yes, we still have times when we can tell a bit of reflux is coming back, we have a few weeks of hell again, but finally now at 16 months, he has been pretty stable the last few months, so hope this continues.

  • http://chroniclesofnadia.com.au/ Nadia Bartel

    Thanks for your message. Even after Aston’s reflux finishing we still had so many issues with his sleep. Finally at 14 months he started sleeping through and now he does it all the time. It makes everything so much easier x

  • http://chroniclesofnadia.com.au/ Nadia Bartel

    Thanks so much Anita xx appreciate you reading my post. There is definitely light at the end of the tunnel x

  • http://chroniclesofnadia.com.au/ Nadia Bartel

    Thanks for your advice x

  • Lauren

    Wow! I could have written this myself. It’s so reassuring to know I’m not the only one going through this. What resonated most with me is when you point out that you just feel your baby is ‘worse/harder’ than most newborns. That’s how I feel. A friend told me to accept not sleeping for the first 12 weeks but I kept thinking that surely only getting an hour or two of unbroken sleep every night wasn’t normal. I had many nights where I got zero sleep too. It felt neverending. My baby is 8 weeks old and also has terrible tummy problems. I’m only seeing relief now because I am sleeping my baby on his stomach. I know this is against SIDS but I am taking all precautions with video and movement mat monitors. So now my baby has been sleeping during the night and sometimes during the day. It’s a massive improvement. I’m so jealous of the mothers of newborns who instantly sleep 4-5 hours!

    Anyway, it was refreshing to read your story. Thanks for sharing.

    • Lauren

      Oh and my baby is so much happier for getting some sleep!

  • Kristy-lee Morrison

    Hey! I had silent reflux from birth right up until I was 15. My mum said I would scream in pain non stop, I had blood tests, specialist appointments, ultrasounds, mylanta etc nothing worked. Until at around 12 I was given losec which finally worked, I was on it until I was 15 and then I stopped and only ever got reflux again from a couple of times drinking acidic juices or wine. I am now 25 and I have not experienced it anymore but I can say it was the most horrible pain I have ever been in. Almost every Christmas I couldn’t even be with my family because I would be curled over in bed with a heat pack or laying in the bath trying anything to relieve it, even eating made it feel better which pushes the stomach acids down but also eating would make it worse once it would rise again! Having it from birth up until 15 I can tell you all it is a horrible pain and I can only go off what my mum told me it was like for me as a baby and what I remember when I was a kid. Losec really worked, mylanta and all of those other ones are short term and losec is long term!!

  • Frangipani Petulia

    Hi, Is Daani still consulting, and does she service Geelong? I’ve tried to contact her on the number listed with no success. We have 8 week old twin boys with bad reflux (not silent) and wind.

    • http://chroniclesofnadia.com.au/ Nadia Bartel

      Yes, she is definitely still works. She is really busy so sometimes may take a few days to get back to you, sorry.
      Nadia x

  • Tania Marano Pace

    Thank you so much for writing this Nadia! I’m a first time mum and this post is the reason why I booked my 3 month son in to a peadiatrician. He has exactly the same symptoms as Aston! He has now been on losec for 5 days and I have seen an improvement already! He has been a screamer since I took him home from the hospital and I too copped the “babies cry” speech from many. I have gone three months at home with an undiagnosed silent reflux baby and it has been the most challenging time of my life! He is still on belamys organic formula but I’m going to start the aptamil because I’m not convinced that he isnt intolerant to the protein in cows milk! It’s worth a shot and as you said mumma’s know best… I should’ve listened to my gut from the start. Can’t thank you enough…

    Tania xxx