No one mentioned reflux

First of all silent reflux needs to be changed to screaming reflux. The word silent makes out that there is something serene and quiet about it. However if you've ever had a baby with severe silent reflux you’ll know there is definitely nothing silent about it….

The first two weeks with my first born were bliss; she fed and she slept like a dream, she was one of the sleepy newborn babies, I had tonnes of milk, I fed her, wrapped her up and she went off to sleep. Everything was going very very well. We were possibly in the honeymoon period that I had read about.

After two weeks things started to change a bit. I noticed there was something strange about the way she fed, but being a first time mother I had no idea what I was doing anyway. She would feed for a little bit then pull off, then feed and pull off; this happened at least 10-20 times per feed. My midwife said I had an oversupply of milk and a forceful let down and Millicent simply couldn't handle it. She explained it as having a fire hose turned on inside my mouth. Ok, I got it, this definitely explained why she couldn't swallow properly.

My little baby started waking up a bit more now she wasn't that sleepy sleepy newborn and she started not settling as well as she had. My husband and I were up at night stroking her eyes or side settling by patting her bottom to get her to sleep now, whereas she hadn't needed this before. She was taking much longer to settle. Along with this fussy feeding and bad settling came a lot of wind as well. Every time she latched back on she would gulp in air, you could hear her swallowing it straight into her stomach.

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By 4 weeks she was still fussy feeding and it was getting worse. I started to wonder if I was trying to over-feed her; maybe she just didn't want any more milk? She was cutting right back on feeds and only feeding for maybe 15 minutes at a time. My midwife said "oh she is just an efficient feeder".

She also started not settling at all, starting to cry all the time, hating being in her carseat capsule, gulping in air when feeding, not taking a bottle anymore (when she had at first) and just generally not happy. She would stop breathing every now and again and she had really bad breath.

I called a lactation consultant. Again she said it's all because of your let down. Try different positions of feeding. Try laying down to feed her, or lying on your back with her on top of you. So I tried every position possible, even walking around while feeding. Now she was pretty much crying after every feed and by crying I mean for an hour and a half after every feed. I knew this wasn't right, surely this isn't right! Other people told me that babies cry and that it was normal for her to cry like this. But they hadn't seen it. They weren't with her for 24 hours a day seeing her scream her lungs out most of the day. Our days basically consisted of her waking, feeding, then screaming for an hour and a half until she went back to sleep, all for it to repeat again 2 hours later.

Weeks 4 to 6 was hell! I called four different lactation consultants, Plunket, my midwife and we even had a Keratane nurse come. Everyone kept saying the same thing:

 

"It's your let down!"

 

But why was she doing to same with a bottle?? Why was she only feeding for 5 minutes? Why couldn't she swallow properly? The Keratane nurse said it's like she hasn't learnt how to swallow yet?? What? Really? I had NO idea.

None of my friends had babies like this, none of the girls at coffee group were having problems. No one would listen to me and by this stage I was VERY desperate. The only way I could calm my screaming baby was to lay down on my back with her on top and pat her on her back, and by pat I mean PAT! We were up all night. My husband and I would take 45 minute shifts of sleeping while the other tried to get our baby to sleep. Finally she would go to sleep but wake only 35 minutes later. The poor thing was loosing weight and fast. She wasn't feeding enough. She COULDN'T feed enough.

I was now not able to go out, the only way she would feed was by me laying down on my recliner (and remember she pulled off 20 times a feed). I could hardly do this in my local cafe with friends having a casual coffee. Not to mention I was exhausted from being up all night. I had tried all different feeding positions - standing up, distracting her, shunting her bum while feeding. All while every one of her little limbs were fighting me; she didn't want to feed.

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It got to the point where I was feeding her, then getting my husband to bring top up bottles to try and get more milk into her, but even the bottles she was struggling with. I tried every single bottle and teat available, we spent a fortune. I was also wary as any first time mother is, maybe this is going to cause "nipple confusion" but she had to be fed!

5 weeks 5 days, it was a Saturday. I still remember it vividly even though it's 2.5 years later now. It had taken until 9pm to get her to sleep, although that was normal lately. She woke again at 11pm. Took until 1am to get her back to sleep. She woke at 3am. I'm feeding her, while I almost fall asleep, she starts screaming. I ask my very tired husband to get some expressed milk from the freezer. He's heating it up (taking what seems an age, while I'm holding screaming baby). I'm now crying and exhausted, as she just wont feed but even I, first time mother, could tell she was STARVING. Finally Luke comes in with the bottle of expressed milk, which of course he had to heat up by resting it in hot water. IT DID TAKE AN AGE, especially at 3am holding screaming baby. I'm crying, baby crying, husband flustered. I remember screaming/crying over the baby "THIS. IS. NOT. NORMALLLLLLLL!!"

I knew there was something wrong, I knew this wasn't normal, even my own husband thought that maybe I was being over the top. But I remembered something my mother in law said: "If you think there is something wrong, then you're probably right. You and only you are the one who spends 24 hours a day with her". I just had no idea what 'it' was.

I called lactation consultant number FIVE. She was on holiday but I guess could tell I was so desperate for some help, so she talked to me on the phone. In a passing comment after about half an hour she said "oh that sounds a bit refluxy but yes probably your let down". She was the first person to even mention reflux. I'd never seen my baby spill or spew so no one, I mean NO ONE, had even thought about it.

And then it happened, she fed, then burped then screamed. I could hear something come up with the burp that I'd never noticed before, but she swallowed it back down. Then screamed. Silent reflux.

6 weeks, Sunday: I started googling reflux. Finally maybe an answer. Thank goodness we were going to the GP the next day for her 6 week injections, I could tell him what was going on:

• Screaming after burping
• Mid-scream she would suck in what ever was coming up with the burp, back into her lungs, choke and scream for longer
• Apenea (stopping breathing while asleep and awake!)
• Feeding for only 5 minutes
• Only feed well when very sleepy
• Couldn't swallow properly on breast or bottle
• Tiny bubbles around her mouth constantly
• SEVERE bad breath
• Screamed in the car, constantly
• Constant hiccups, even in her sleep
• Waking constantly and catnapping
• Loss of weight
• Laying awake at night, for hours
• Preferred sleeping upright (in a swing/front pack)
• Took hours every single time to settle. I mean HOURS! As I said we would take shifts overnight
• Starting arching her back
• Voice had changed

 

I felt like the GP was the only person who took me seriously. He weighed her, listened to my list that I'd made. Even he was not sure what the problem was but said that whatever it was, it was extremely serious and that I was to go straight home and make an appointment with a pediatrician and it had to be TOMORROW.

I called the first of the pediatricians on the list my GP had given me, unfortunately he was a 6 week wait. The next doctor I called, when I explained the situation, squeezed us in the next day. Thank goodness!!

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Luke, Millicent and I drove across town to see the pediatrician and I did the same as we had with the GP, went over the list above, went over our family history (both myself and my husband were severely allergic children). He checked her over, listened to her lungs (there was now acid in her lungs) and diagnosed our sweet 6 week old baby with SEVERE Gastro Oesophageal Reflux. Everything on my list was explained by her stomach acid coming up into her oesophagus (food pipe) and it was causing her severe pain and also damaging her lungs and voice box. Treatment: Losec and a breathing monitor for sleeping. Finally he gave us hope that things would get better. He said we were lucky to come in when we did, as any later she would have had permanent damage to her voice box, oesophagus, lungs and ears. In 5 days he said, the crying would stop! I was obviously counting down the hours.

Now I know there is a lot of controversy about administering Losec to a baby. Until you have a child with Silent or Screaming reflux and seen your weak, starving baby in the amount of pain that our baby was in, any parent would do whatever they could to stop that pain. Losec it was.

 

To find out more about the different degrees and causes, read our blogs 'What is Reflux' and learn all about silent reflux in babies.

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