Kailey’s Story

This story is a member’s personal experience and opinion, and is part of their healing process. Please be aware that some of the stories on Crying Over Spilt Milk are of more severe or complicated cases of Gastric Reflux. Serious or complicated cases of Gastric Reflux are rare. If you think you may be disturbed by some content, please visit this page before deciding to read further: Infant Gastric Reflux Stories

Although I had a healthy full term pregnancy Kailey was born a small 5lb 8oz. Right from delivery she screamed and was very difficult to settle.DSC03680 She refused, fussed over or was too weak/ sleepy to breastfeed. A nipple shield helped slightly but nothing else we did made a difference. She started drastically loosing weight and had to be tube fed directly to the stomach for a couple of days. We were then able to move to finger lactation where she sucked my finger and a tube attached to it. Still she struggled screaming and having hiccups a lot. We had some success with gripe water initially. Some nurses told us she was naughty and we had to let her scream it out for 30 minutes and sleep would follow, but this didn’t work!!! At nine days old she was no better but we were sent home from hospital.

I continuously expressed my concern to both the midwife and later Plunket (though probably not strong enough at first being a new mum) but was told that crying was normal. This however was not just crying – Kailey would scream for hours on end, often all day long. No matter what we did sleep would only come by sheer exhaustion, often not until between 9.30 and 11pm, and then only for a short spell. To sleep Kailey had to be wrapped tightly, with dummy intact (a vital piece of equipment) and the bassinet inclined almost vertically. It would take many difficult to achieve burps for her to get rid of the endless wind she had. I would burp her before and after feeds, and every five minutes during feeding. Positioning her for feeding was very difficult, we had to get the attachment exactly right so to minimise air intake and as she was so small I needed two pillows for this. This process would often take two hours by which time it was nearly time to start again.

I determined through research we were likely dealing with colic and had some success with Weleda colic powder. I later found out she seemed to react to lactose in this. At 14 weeks Kailey improved dramatically and we had two weeks of bliss, before all hell broke lose. Her symptoms were now slightly different, and her tummy was even more bloated and rock hard, and the screaming intensified. More internet research and calls to the 0800 plunket line lead me to believe we had now moved on to silent reflux (or had probably been suffering this as well as colic all along). There was not much spilling but gagging and then swallowing evident by white gunk in her mouth. I gained a lot of ideas from this research and fiercely defended myself when the local plunket nurse claimed I had information overload. How was I supposed to try solutions to find the right one for us if I did not have this information in the first place!!

Living in rural Taranaki I found support very hard to come by and there is no family support centre here. We were rationed to one plunket visit a month – the sole nurse only servicing our local town one day a week. My hard working husband at first did not realise the seriousness of the situation. He would only have to tolerate the screams for short periods and did not see why I was such an emotional wreck. Our first Christmas was spent with my husband wearing earmuffs to shut out the ear piercing screams that rang inside your head.

We had a breakthrough after four months when I forced myself to attend a Parent Centre course. Afterwards whilst attempting a feed at the Plunket rooms a Karitane nurse heard the commotion and took the time to watch. This was the first time a health professional saw our situation firsthand. On her advice/ referral I went straight to the emergency GP who prescribed Gaviscon Infant. We used this for one week until teething commenced and it no longer worked. Kailey refused Omeprazole suspension, due to its bad taste1. We switched to Ranitidine which we were able to use as well as giving Gaviscon Infant after feeds.2 This helped some as long as the burping had been done satisfactorily. Often the only way to achieve sleep was to feed her to sleep, making sure to get the last burp out before deep sleep hit, or by rocking the pushchair.

An osteopath failed to help control the reflux. I commenced pushing furiously for a paediatrician appointment but the lack of hospital action over the holiday period made it very difficult to get anywhere even with an urgent referral. After a very grumpy phone call from a mum at her wits end, with no help in sight until the appointment now in three months, I received an appointment for two weeks time.

Meanwhile the five-month plunket weigh in showed Kailey had drastically lost a lot of weight since the four-month check (weight she could ill afford to lose being still so small). As parents we felt like we were failing in our job but as all our energy had been going into just surviving and minimising the screaming we had failed to notice the weight lose.

DSC04454Our appointment with an older paediatrician revealed no other health issues. We were told Kailey probably had reflux. PROBABLY! I nearly strangled him. I’m sure he would recognise it if he had to live with a child with it!! However it was through this appointment that we gained a specialised nurse who took on our care. She visited us at home weekly at first, giving us a much needed listening ear, advice and monitoring Kailey’s weight until it improved. She also referred us to a dietriton who helped guide my diet, alerting me to products I hadn’t even known existed. This was vital as by this stage to help the reflux I was completely dairy free, drinking rice milk, avoiding all remotely possible wind aiding foods such as cabbage, peas, tomato, herbs, onion and my fruit consisted solely of non-acid canned pears. Kailey’s road to solids was very slow starting only on pears and pumpkin (low allergy foods). One food was introduced each week so as to isolate any reactors. Plenty of Gripe water and cooled boiled water was given by syringe to aid burping. We moved to tummy sleeping when Kailey was strong enough to be less of a cot death threat. At nine months I decided in spite of our efforts Kailey had not improved sufficiently and it was time to move on to formula, which I hoped would improve the situation. However I did not want Kailey to suffer any more trials and here the dietician was instrumental in recommending to the paediatrician that we be prescribed the subsidised Neocate formula. We were very lucky as Kailey started walking before ten months and this improved the reflux dramatically. By 12 months she was able to tolerate small amounts of dairy food and we very slowly decreased the medication until at 14 months she was Ranitidine free. We then slowly added blue top milk to her formula and at 18 months were formula free. Kailey now only has mild problems when teething very badly. She can tolerate any food and enjoys her milk – if anything drinking too much! She is a beautiful, thriving, very active little girl. Reflux is a horrible, very stressful condition to live with, but with determination and support you can get through it. We are now planning our second child and pray it does not suffer with reflux. But if it does we know the end result and the joy we get from a beautiful child far outweighs the problems faced along the way from a condition that for the most is not lifelong. My advice to first time parents is to stand up strongly for what you believe in – you, not the health practitioners know your child best.

 

1 Omeprazole suspension was originally formulated for nasogastric tube administration. The recommended method of giving Omeprazole to infants is to open a capsule and give the granules from inside it.
2 Gaviscon Infant should be given before feeds in a breastfed infant. The instructions on the box are incorrect and the drug company representative in NZ in 2006 agrees. Unfortunately changing the instructions may take some as it is a global product. Gaviscon Infant should not be given within two hours of Ranitidine as it decreases the effect of Ranitidine if given closer.

© Sheree, Mother and Member, Crying Over Spilt Milk Gastric Reflux Support Network New Zealand for Parents of Infants and Children Charitable Trust September 2008.