Fundraising for Reflux - my story & call for ideas!

So 2 1/2 years on since Su Yin was born, and I finally feel like I'm past those initial dark days of living with a baby with reflux. Parents who haven't had a child with reflux will never truly understand how difficult it is. I've remember receiving comments about how good a baby she seemed, that "she looks happy enough" and "a child will never starve itself". All well meaning, but they had literally no idea. Even well meaning family have made comments about how "these things are taken too seriously and medicated too easily and they didn't medicate everything in their days".

Reflux is a condition where the stomach contents and acid comes back up the oesophagus and either makes the child vomit (reflux) or enters the throat and is swallowed back down again (silent reflux). The condition is painful for the baby and in extreme cases can cause scarring to the oesophagus. Symptoms can include thrashing, constant crying due to discomfort, comfort feeding to avoid the pain (and subsequent frequent vomiting) or, as in the case of Su Yin, refusal to feed resulting in a negative association of feeding with pain and lose essential weight and nutrients.

Living with a baby with reflux is all consuming. They rarely settle, hate being laid down flat due to the reflux and prefer to be held upright, don't sleep due to the pain and reflux, often don't eat/feed well. GP's still don't seem trained well enough to spot the symptoms of reflux (particularly silent reflux where the child doesn't actually visibly vomit - I was even told by one GP that silent reflux doesn't exist!) and will misdiagnose as "colic", a catch all for unexplainable constant crying. Mothers who seek help are often fobbed off by health professionals, told "a child will never starve itself and will feed when it's hungry" and to try "little and often". This never worked for my child. Our attempt to leave her until she wanted to take a bottle resulted in her not feeding for 8 hours and at risk of dehydration. Not something that should be taken lightly at 4 months old! Mums are made to think they're being paranoid and neurotic, passed from health visitor to GP and back, and literally have to fight for either medication or a paediatric referral. It took us 8 months of hell before we were referred to a paediatric allergist (Su Yin'a reflux turned out to be due to a dairy/milk protein allergy) and subsequent speech and language therapist to help resolve the feeding/bottle aversion. 

The knock on effects of not catching reflux early are massive. In our case, Su Yin yoyoed between 2nd and 25th centile, drastically losing weight every time she got ill. Looking at photos of her after a bout of flu or stomach bugs break my heart even now, as she never gained sufficient weight to have any to spare when she was struck down with an illness. Our first and only trip to Hong Kong was met with concerned comments from family about how thin and ill she looked. 8 months of pain set in concrete a negative association which translated into her refusal to eat or drink anything. For months I was forced to exclusively feed her by bottle in a pitch black room whilst she slept, on tenterhooks in case a police car siren or doorbell woke her, meaning she'd wake and refuse the rest of her feed. Weaning started at 5 months in a desperate attempt to top up her calories as she wasn't drinking enough to gain weight, but the negative associations translated to solids as well. She didn't eat until she was almost 1 1/2 and it's only since she turned 2 that I can set a plate in front of her and walk off and know she'll actually pick up the good and eat it herself, without me physically putting it in her mouth for her. She still to this day refuses to hold a bottle and I have to sit and hold it for her. 

It also has a huge impact on the family. I spiralled into a deep depression, losing all confidence and struggling to get out of bed some days. I panicked any time I was left with her on my own, and would count the hours down until the next bottle with so much dread that it consumed me. Without the support of my husband and parents and key friends, I generally think I would have been on antidepressants and needed counselling. I was very close to it and with hindsight perhaps should have received it anyway. 

So why am I writing all this now? Well, now that I'm pregnant for a second time, something I really didn't think I'd ever do, I've started reflecting on how difficult the first time was, and there's a shadow of fear which sits over me and this pregnancy, a dread that the second child will have the same issues as my first. Obviously I'm clued up this time round. I'll be more assertive and pushy. I'll spot the symptoms and insist on treatment as early as I can. But that doesn't prevent me from worrying. And it also made me think about how so many other mums out there are still struggling with no idea or support. Reflux is so common. Just in my team at work, 2 other mums have had babies with reflux, one with a milk allergy, the other not. Both have experienced first hand how hard it is to cope with and have said they now understand how awful it must have been for me. One didn't even get the milk allergy diagnosed until she returned to work from maternity leave and I suggested she get it tested. 

So I want to raise awareness and increase support for all those mums and babies who are suffering. So I'm asking all of YOU to give me some fundraising ideas. I might do one, I may do several. Comment below or on my facebook if you're a friend, and give me some ideas. All funds I raise will go towards the charity Living With Reflux http://www.livingwithreflux.org/our-reflux-baby-experience-seeing/. Please spread the word, like and share! And if you know a mum who may be coping with reflux, send them to the Living with Reflux page or the INVALUABLE facebook support group (which really was my 24 hour support network and a complete life saver - the combined knowledge of those mums far exceeds any health professional I've spoken to!) http://www.facebook.com/groups/267076970042881