Ella was a very much wanted baby who was our little miracle after assisted conception medication was taken and then a high risk pregnancy. Almost as soon as she was born she was crying and screaming for long hours.
I can remember in the hospital on our second or third night and Ella feeding constantly and screaming and crying. Nothing would settle her and she would not go to sleep. After hours of this the midwives offered to take her from me to try and get her to sleep and so that I could rest. At first I refused as I said I needed to learn how to settle her myself but then hours passed and the midwives came back. I am sure Ella’s screaming could be heard throughout the entire hospital keeping everyone awake. When they brought her back in the morning I asked if she had gone to sleep and they said no. All the books I was reading said that newborns slept 18-20 hours a day! Not my child!
When we arrived home I was full of hope that she would sleep once she got used to her new surroundings. This wasn’t to happen. I was breastfeeding constantly as it seemed to soothe her at first but then the pain and screaming would start. She also had explosive poo’s – up to 20 a day that would burn her poor little bottom and was also another reason why she woke when she did sleep for short periods. She was gaining lots of weight so friends, family and the doctor kept assuring me that she would settle soon. I now know she was comfort feeding and this led to great weight gain (though this would change later on).
My husband was off work for 6 weeks and I am so thankful for this as our days and nights were filled with feeding and trying to settle Ella so that she would sleep. We were rarely successful. Normally she would feed for an hour and then we would try and settle her for the next 2 hours until I had to feed her again.
If she did sleep it was only ever for 30 minutes and generally this was with her standing bolt upright against us with her little head flung over our shoulder. If we attempted to put her in the cot when we thought she was asleep she would be awake within a few minutes screaming the house down.
At 3 weeks of age there was one night that just broke us completely. She did not sleep for 17 hours straight. She was awake from 5pm until 10am the next morning – and even then she only slept till 10:30am! That night was a night of terror for us. We knew then that something was terribly wrong with our daughter, that it wasn’t just us thinking that she cried a lot or that we couldn’t handle a crying baby. We didn’t know whether to take her to a hospital or not but we were afraid we would just sit their for hours as they would think we were just overreacting parents. So we rung tresillian, karitane, the parent line etc . They all told us to stay calm with our baby and start the bedtime routine again, give her a bath to relax her and be consistent. I can remember yelling at the lady from tresillian at about 4am in the morning saying “We have done all of that, over and over again, she has had about 10 baths tonight and IT’S NOT WORKING!!!!!!”. She then said “oh ok, maybe take her to the doctor in the morning.
The doctor said “it’s probably a bit of reflux” and told us to give her some mylanta and we were referred to a paediatrician. The mylanta didn’t seem to have any effect.
The paediatrician put her on Zantac which did improve things but not alot. The paediatrician said she might be lactose intolerant, so he did the test but it came back that she wasn’t. He then told me she may have a milk protein allergy, and to stop breastfeeding and put her on neocate. This devastated me. I lasted one day with expressing and could already tell my supply was dropping. I told him if he could tell me for sure it was it, I would stop but didn’t want to find out it wasn’t that and then just put her on normal formula having lost the ability to feed her again. He had no answers for me. I stopped eating dairy but this had little effect. So I continued breastfeeding. I was given no support or information when I decided to keep breastfeeding. She developed eczema on her face too that only went away slowly after steroid cream was used. The paediatrician was very unprofessional in my view and only made me feel like a bad mother who couldn’t cope with a crying baby.
I started researching and went back to the paediatrician and begged him to prescribe losec. He finally did when she was almost 4 months old. Losec seemed to work well, though only ever took the “edge off” she still had lots of pain and was a shocking sleeper. She slept with her head and neck at a very weird angle too. By this stage she had become very fussy when feeding. She would pull off me, bite me, hit me with clenched up fists and ultimately this led to breast refusal. As it was a slow regression in feeding I didn’t notice just how much she had stopped wetting nappies. She lost weight, stopped growing in length and dropped quickly down the growth percentiles. I was crying every time I fed her as it was so stressful and stopped going out as people would comment on my screaming baby and would tell me they had never seen such a “sad, serious baby”. They would then offer their advice, book or routine that “worked a treat with their baby!” meanwhile not listening to me when I would say NO routine would work with Ella as she never slept!
By 6 months I was exhausted, emotionally wrecked, highly anxious and extremely sleep deprived. Everyone kept telling me to “try this, or that” and I did and then waited for it to work – which it did not and the months rolled on.
I went back to the paediatrician and said I needed a referral to Tresillian (a sleep school). He told he he didn’t refer patients there because it was too much paperwork for him. I could not believe he said this too me. I walked out of his office vowing never to go back with tears streaming down my face.
I finally did go to a sleep school – who were also unable to make her sleep! At the end of our extended stay there they told me that I had to accept that I couldn’t make her sleep that I could only provide the right environment for her to go to sleep in. It was there that I was also diagnosed with PND – it manifested in anxiety and feelings of helplessness and worthlessness as a mother.
At 6.5 months I was sitting feeding her while I had mastitis (for the 5th time as she had stopped draining me properly as she had developed pain association with myself feeding her). I just snapped and thought how ridiculous it was to keep breastfeeding when she hated it and I was a mess, so I stopped that day and put her onto formula. This did not solve her reflux issues though gave me a bit of time out from feeding her.
We started seeing a new paediatrician who has been lovely. He upped her dosage of losec every time I said things were getting worse and also when she gained weight. She also saw a physio as she didn’t know how to isolate her muscles, therefore was late to roll, sit, walk etc. This was because she was always tensing her muscles from pain. Every time I fed her (breast, bottle, solids) she would have her fists and toes clenched tight.
She started to improve slowly from about the time she was 12 months. She has always been a fussy eater, but gradually she has put on weight and grown in length.
Attempts to wean her off losec and later nexium failed each time, with all symptoms returning. A barium swallow and follow through showed mild to moderate reflux at 23 months old. As a toddler she complains of “tummy hurting” and “yucky bits in mouth”. She still sleeps with her neck at an unnatural angle at times and wakes throughout the night, often crying.
We have recently seen a gastro specialist who did an endoscopy. He suspects she had breastmilk colitis as an infant from the symtoms described to him and this has led to further issues with gastro reflux. He told us he suspected to find she had Eosinophilic Esophagitis, as reflux in 2-3 year olds in not normal and that there is usually something else causing it, if they do still have it. However, her results came back clear, so she does not have Eosinophilic Esophagitis. He has told us to wean her off the nexium very slowly this time and that he only wants to put her back on her reflux medication for short periods of time off and on. If she is still suffering in a year then he will see us again and possibly do another endoscope to see what is happening off her medication and possibly fundoplication surgery.
We are currently praying that her symptoms do not return in full force as she stops her medication. Ella is almost 3 years old now and is the most creative, active child who has a very bright personality that lights up each room as she enters it. Her favourite activities are dancing, painting and jumping on her trampoline. She is a wonderful big sister to her baby brother Oliver.
She is the light in our lives!
Erin is a very new RISA member and was not a member at the time of writing this story. We are incredibly grateful for her contribution and trust.
Editor’s note: If your baby is as sick as Erin describes DO NOT HESITATE TO GO TO THE EMERGENCY DEPARTMENT. It is not normal for a baby to be awake screaming around the clock and no one has the right to tell you its your fault if your baby is clearly unwell.
Erin and Ella’s story is particularly harrowing for a number of reasons. Erin was not a RISA member at the time of writing. She has been through all of this without the support of other people who’ve been there before her.
A huge thank you to Erin for talking about PND as it relates to reflux mums. We’re not entirely sure that what reflux mums most often suffer is strictly PND – more straight-up depression bought on by exhaustion and often lack of help and understanding. Nonetheless it is very real and it is extremely important that we talk about it as reflux mums and seek help for ourselves as well as our children. Please, if you think you need assistance, even if it is just because your circumstances don’t show any sign of abating for the time being, it is important to be honest with yourself and to seek help. Your local GP can help and a call or glance at Beyond Blue‘s resources may be invaluable.
Let Erin’s story be a reminder to always trust your instincts and seek out help for your baby even if the medical professionals around you are telling you nothing is wrong. It shows amazing resilience that Erin has managed to continue to fight for her child given the number of set backs she’s received. Inevitably, in our experience, mum’s instincts are pretty spot-on. If you are concerned about a response you get from a medical professional, you are well within your rights to seek a second opinion. Particularly, in relation to the field of paediatric gastroenterology which is a relatively young medical field (started in the 1980s with the ability to perform an endoscope on small children a relatively recent innovation), it is important to find a medical professional who knows something about gastro-intestinal issues if you feel that is a problem with your child. We still believe paediatric gastroenterology training is lacking among GPs and paediatricians with Australian paediatric registrars still not required to do a GI rotation before qualification. However, there are great general practitioners and paediatricians who know their stuff and are more than able to help our babies.