Natalie was born in 1992, a desperately wanted baby. She was born in respiratory distress, which took a while to settle and she spent several days in the Special Care Nursery needing oxygen and being tube fed.
At home, she wanted to feed every 2 hours, which is a pattern her sister had had. She hated being laid down flat and would often cry if I tried. She did not sleep well either, and at 12 months was still waking a dozen times overnight, and rarely during the day.
She was very irritable and cried almost constantly. Unfortunately too, she suffered from a lot of respiratory issues. She was hospitalised a number of times over the next few years. She often had chest infections, asthma attacks and pneumonia, although her doctors could not fathom why her respiratory issues were so difficult to control. We had a strong family history of asthma on both sides, so they looked no further. None of the doctors I ever talked to mentioned the possibility of reflux. However, we have learned there was an equally strong family history of reflux on both sides of the family too, but that was never questioned.
I was chronically sleep deprived, and eventually placed a mattress on the floor next to our bed. She felt more comfortable being near us, and I felt more comfortable being able to check on her without having to get up through the night. She was four years old before she started sleeping through the night (and her reflux had still not been diagnosed at that point).
Eating was a constant struggle and I often thought she would rather go hungry than eat something she didn’t like. In fact, she often did.
Natalie had a lot of behavioural issues – she was extremely clingy and moody and threw terrible temper tantrums. I tried to talk to our GP about these issues, but he wouldn’t listen. I explained what she was like and I was gobsmacked to be told that she couldn’t be like that as she was too beautiful. How that was related I could never fathom.
It wasn’t until her brother Anthony was born, and then ultimately diagnosed with reflux that we realised what the problem had been when she and her sister were babies. Neither had ever vomited and back in those days, reflux was not a well recognised childhood condition. I also presumed they had outgrown reflux as babies; even though current research is revealing that reflux may be a lifelong condition, that was not the understanding of the time.
It was not until I was talking to a RISA parent about reflux in older children (regarding Anthony) that I realised reflux was still an issue for Natalie. The parent was describing possible signs in older children and with horror I realised she had described Natalie perfectly- the tantrums, the moodiness, being extremely sensitive (she would cry at the drop of a hat and lose the plot over tiny things), the clinginess, eating issues, constant waking overnight, being restless in her sleep and despite sleeping very long hours would wake tired and irritable. She would also grind her teeth whilst asleep. She also had frequent hiccups and would often complain they made her tummy sore. She was 6 years old before she started to complain of pain and feeling sick.
I spoke with our GP and he referred her to our paed gastro who immediately scoped her, given her long term issues. Thankfully it did not show any scarring or long term damage, though did show gastritis. Losec was prescribed, and later on, so was Periactin, in an attempt to stimulate her appetite.
Natalie also had a pH probe, which showed reflux, and that, combined with her pain and other behaviours, was enough for our paed gastro to recommend a fundo for her. Even though Anthony had had a fundo already, and it has been remarkably successful, it was not an easy decision in our second child, and she was now 7 years old too. She needed to participate in the decision. At first she did not want to do it – she thought it meant she could no longer drink soft drinks, and that to her was the worst thing, but eventually she decided on her own that she could not put up with the pain. By this time, our paed gastro was less certain it was the right path, so I began recording her complaints of pain. I wondered if perhaps I was making more of it than it actually was, or whether I was just remembering the complaints so it seemed worse than it was. I recorded all complaints of pain and any behaviours over a month or so, and what I saw was horrifying. I discovered the value of recording things, as what Natalie was experiencing was far worse than what I had realised, or what my memory had allowed me to perceive. She had almost daily pain, and it was severe. She was unable to do most activities, and she had very little quality of life. I made an appointment with the paed gastro again, who read the diary and just looked at me and said “It’s time”. We got a referral to the surgeon who had no hesitation in performing Natalie’s fundo.
During the fundo, the surgeon discovered she had a large hiatus hernia, which explained why the symptoms were worsening. He repaired her diaphragm and performed the fundo. As with Anthony, recovery was difficult, and Natalie had additional issues. She had 2 dilatations as she was getting food stuck, and then oesophageal manometry confirmed she had a motility condition called ‘nutcracker oesophagus’, just as Anthony had, only much more severe. I believe our surgeon now performs oesophageal manometry before fundos these days, to determine whether any motility issues are impacting. It would affect the decision on whether to perform a full or partial wrap and how tightly it is done.
Despite the issues, Natalie is now reflux free. She does not require reflux medication, though because of the motility issue does need to be careful when she eats. She has also suffered from bowel issues, related to the motility condition, but that is a whole other story. As with her brother, the fundo has dramatically improved her quality of life and I wish we had been able to have it done much earlier.
Natalie is now a bright wonderful young woman who has had to overcome more obstacles in her life than anyone should have to. She is far stronger than she realises, is honest, reliable and hardworking, and has a wicked sense of humour.
Position: RISA Stateswoman, Author of Reflux Reality: A Guide for Families!!
Glenda lives in Brisbane and has been a RISA member since 1996.
Contact Glenda on the RISA forums – username: Glenda